Improving Communication in the Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate Study
Phase: NA
Conditions: Communication
Sponsor: Ann & Robert H Lurie Children's Hospital of Chicago

Title: Improving Communication in the PICU for Patients Facing Life-Changing Decisions: the Navigate 
Study 
Short title: The Navigate study 
Sponsor: Patient-Centered Outcomes Research Institute 
Protocol Date: Sept. 18, 2014 
Principal Investigator: 
Kelly Michelson, MD MPH 
Associate Professor of Pediatrics and Buehler Center on Aging, Health & Society at Northwestern 
University Feinberg School of Medicine 
Attending Physician, Division of Critical Care Medicine at Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
225 E. Chicago Avenue 
Box 73 
Chicago Illinois 60611-2605 
Phone: 312-227-1606 
Email: kmichelson@luriechildrens.org 

ii 
 
Study Team Committees 
Research Advisors 
 
Kelly Michelson 
Principle Investigator 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
kmichelson@luriechildrens.org 
Office: 312-227-1606 
 
 
 
 
 
Dr. Doug White 
University of Pittsburg 
whitedb@upmc.edu 
Dr. Marla Clayman 
American Institutes of Research 
mclayman@air.org 
 
Dr. Joel Frader 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
jefrader@luriechildrens.org 
 
Ms. Lauren Sorce 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
LSorce@luriechildrens.org 
 
Dr. Melanie Brown 
University of Chicago Comer Children’s Hospital 
Mbrown3@bsd.uchicago.edu 
 
Mrs. Patricia Fragen 
Normal Moments 
tricia@normalmoments.org 
 
 
Jody Ciolino 
Statistician 
Northwestern University 
jody.ciolino@northwestern.edu 
Karen Rychlik  
Statistician, Data Manager 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
KRychlik@luriechildrens.org 
 
 
Dr. Stephen Persell 
Consultant 
Northwestern University  
SPersell@nmff.org 
 
Dr. David Victorson 
Consultant 
Northwestern University 
d-victorson@northwestern.edu 
 
 
 
 
 

iii 
 
Research Support Team 
 
Laura Campbell 
Clinical Research Coordinator 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
lacampbell@luriechildrens.org 
Office: 312-227-1618 
 
Danica Aniciete 
PICU Supports Navigator 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
daniciete@luriechildrens.org 
Office: 312-227-1616 
 
 
 
 
Healthcare Team Member Advisors 
 
Dr. Jennifer Reichek 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
jreichek@luriechildrens.org 
 
Dr. Craig Smith 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
cmsmith@luriechildrens.org 
 
Dr. Reggie Duerst 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
RDuerst@luriechildrens.org 
Dr. Erin Rowell 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
ERowell@luriechildrens.org 
 
Ms. Amy Johnston 
Social work 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago 
AJohnston@luriechildrens.org 
Ms. Terra Caswell 
Ann & Robert H. Lurie Children’s Hospital of 
Chicago  
TCaswell@luriechildrens.org 
 
 
Dr. Farah Ali 
Northwestern University 
f-ali@northwestern.edu 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

iv 
 
 
 
 
 
 
 
Parent Advisors 
 
Mr. Michael Goldberg 
Mrs. Katie Leander 
Mrs. Rei Schenk 
Mrs. Pamela Spadino 
Mr. Michael Terhorst 
Mrs. Elizabeth Terhorst 
Mrs. Stacey Turner 
 
 

v 
 
Document History 
Amendment 
Date 
Changes 
Amendment 1 
12/2/14 
1. Additions were made to the PICU Handbook including the 
following: 
- Page 20 “of” added to the text in the margin 
- Pages 28, 31, and 35 words and their definitions are added for 
“bradycardia” “hypertension” “hypotension” “tachycardia” and 
“tachypnea” 
- Page 45 Information about laundry facilities and getting food is 
added. 
2. Section 4.7 of this protocol was changed to include the CD-
RISK-25 scale, a measure of resilience. 
3. A typo was corrected on page 6. 
4. Modifications were made to Parent Questionnaire 1 including 
the following: 
- Page 7 – the bold and underline was removed from the word 
“fine” 
- Page 8 – the word “Moderately” was changed to “Moderate” 
- Pages 9-11 – the CD-RISK-25 items were added 
5. Modifications were made to Parent Questionnaire 4 and 5 
including the following: 
-Page 14 of Parent Questionnaire 4 and Page 15 of Parent 
Questionnaire 5 – the word “Moderately” was changed to 
“Moderate”  
- On page 3 added “Did not use” as a response option for 
intervention questions, added a question about the question 
prompt list in the back of the PICU handbook, and reworded the 
question about the use of the diary to include the use of the 
calendar 
-Fixed some formatting errors. 
- On page 12 of Questionnaire 4 changed the wording on the top 
of the page to read, “The following questions are about decision 
making in the PICU.” 
6. Addition of a cover letter email to the Healthcare team for the 
Healthcare team member survey 2. 
7. On Healthcare team member survey 2 rephrased the question 
about diary on page 5.   
Amendment 2 
02/02/2015 1. pg 3: included Cardiac Intensive Care Unit (CICU) as a 
recruitment location for potential participants of the pilot. 
2. pg 4: Inclusion criteria was changed from “will be in the PICU 
for 3 or more days to “are likely to require PICU care for at least 
24 hours from the time a study team member inquires about the 
patient’s projected length of stay in the PICU (as determined by a 
member of the patient’s PICU team) or” 
3. pg 5: During the daily weekday screening the patients 
physicians will now be asked  “if he/she expects the patient to be 
discharged from the unit that day or the following day” 

vi 
 
4. pg 6 & pg. 23: Removed the need for a parent to sign a consent 
form within 24 hours of hearing about the study. Parents are now 
asked to sign the consent form after they have received a copy 
and have had enough time to ask questions of the research team, 
which may be more than 24 hours after hearing about the study.  
5. pg 7: Added the option for the Navigator to continue visits with 
the family transferred to a regular floor bed, when appropriate.   
6. pg 8 & pg 14: Included the Navigator Reflection Sheet as a 
piece of the Navigator Documentation completed at the time of 
data collection from participants.7. pg. 14: Included the Patient 
status update in the data collection table 
8.Appendix 1: Patient Screening Form: Changed the estimated 
length of stay from <3 days or ≥3 days to likely to require PICU 
care for  <24 hours or ≥24 hours 
9. Added Appendix 5: The Navigator Reflection sheet 
10. Added Appendix 6: Patient Status update (place to keep data 
being collected per section 4.11 of this protocol 
 
Amendment 3 
02/26/2015 
1. Added Eric Price to the Research Personnel – approved 
by IRB on 02/26/2015 
  
Amendment 4 
02/27/2015 1. Pg 4 Addition of Spanish translated forms 
2. Pg 3 &17Changed the target enrollment for the pilot period 
from 30 patients and up to 60 parents to 60 patients and up 
to 120 parents. 
3. Added the option for Healthcare team members to take part 
in an interview if unable to take part in the focus group 
opportunities. 
Amendment 5 
03/25/2015 1. 
Appendix 7: Questionnaire 1 added a question regarding 
household income.   
2. 
Appendix 12 and 13: Questionnaires 4a and 5a have been 
added to the protocol as surveys for the control arm 
participants to complete.  
3. 
Appendix 8,9, 10, 11: Questionnaires 2, 3, 4B and 5B: added 
a line on the first page that indicates how long the survey 
will take 
4. Appendix 15: Added a Thank you letter to parents that will be 
sent upon discharge from the PICU.  
5. 
Appendix 30: Added the Educational Brochure for the 
Control Arm 
 
Amendment 6 
10/19/2015 1. Addition of language to HTM survey distribution to give 
healthcare providers post family meeting survey after they 
participate in a family meeting for a family enrolled in the 
study. 
2. Addition of Appendix 19: HTM Post Family Meeting survey 

vii 
 
3. Removed personnel Eric Price, Kristen James, and Sergio 
Grajeda from the protocol 
4. Updated Farah contact information 
 
TABLE OF CONTENTS 
Table of Contents ................................................................................................................... vi  
Abbreviations and Definitions of Terms............................................................................. ix  
Abstract ............................................................................................................................... xi  
1.0 BACKGROUND INFORMATION AND RATIONALE 
2.0 STUDY OBJECTIVES 
3.0 INVESTIGATIONAL PLAN 
3.1 General Schema of Study Design 
3.2 Study Duration and Number of Participants Projected 
3.3 Study Populations 
3.3.a. Case Patients 
3.3.b. Parents of Case Patients 
3.3.c. Healthcare Team Members 
4.0 STUDY PROCEDURES 
4.1 Pre-Post Healthcare Team Member Assessment of Team Communication 
4.2 Screening 
4.3 Consent 
4.3.a 
Parents of case patients 
4.3.b 
Case patients 
4.3.c 
Healthcare Team Members 
4.4 Randomization 
4.5 Intervention Details 
4.5.a 
Navigator Activities 
4.5.b 
Ancillary Tools 
4.5.c 
Navigator Documentation 
4.6 Control Details 
4.7 Surveys 
4.7.a 
Surveys collected from parents receiving the intervention 
4.7.b 
Surveys collected from parents not receiving the intervention 
4.7.c 
Surveys collected from Healthcare Team Members 
4.8 Distribution/Collection of Surveys 
4.8.a 
Parent surveys distributed/collected in the hospital  
4.8.b 
Parent surveys distributed/collected after PICU discharge 
4.8.c 
The Healthcare Team Member Communication Survey 
4.8.d 
The Healthcare Team Member Post Family Meeting Survey. 
4.8.e 
The Healthcare Team Member Study Survey 
4.9 Interviews and Focus Groups 
4.9.a 
Parent Interviews 
4.9.b 
Healthcare Team Member Focus Groups/Interviews 
4.10 
Plan for PICU readmissions 
4.11 
Data To be Collected 

viii 
 
4.11.a Patient Screening Information 
4.11.b Case Patient Information 
4.11.c Survey Data from Parents 
4.11.d Survey Data from Healthcare Team Members 
4.11.e Interview Data from Parents 
4.11.f Focus Group/Interview Data from Healthcare Team Members 
4.11.g Navigator Documentation 
4.11.h PICU Supports Ancillary Tools 
5.0 DATA MANAGEMENT 
5.1 Maintaining Study Documents 
5.2 Data Entry 
5.3 Data Safety and Monitoring 
6.0 STATISTICAL CONSIDERATIONS 
6.1 Sample Size 
6.1.a 
Pilot Study 
6.1.b 
Randomized Control Trial 
6.2 Quantitative Analysis 
6.2.a 
Aim 1 Determine the feasibility, perceived acceptability, and effectiveness of 
PICU Supports 
6.2.b 
Aim 2 Test the impact of PICU Support during and after PICU discharge on 
parent outcomes 
6.2.c 
Aim 3 Test the impact of PICU Supports on parent and HTM assessments of 
communication and team collaboration 
6.3 Qualitative Analysis 
7.0 REGULATORY AND ETHICAL CONSIDERATIONS  
7.1 Risk Assessment 
7.1.a 
Identification and Management of Adverse Events 
7.1.b 
Identification of parent morbidity after PICU discharge 
7.2 Potential Benefit of Study Participation 
7.3 Request for waiver of consent 
7.4 Health Insurance Portability and Accountability Act (HIPAA) 
7.5 Informed Consent Process 
7.5.a 
Case Patients 
7.5.b 
Parents of Case Patients 
7.5.c 
Healthcare Team Members 
7.6 Privacy 
7.7 Confidentiality 
7.8 Cost, Compensation and Participant Reimbursement 
7.8.a 
Study costs 
7.8.b 
Participant reimbursement 
8.0 ANTICIPATED STUDY TIMELINE 
9.0 REFERENCES 
10.0 
APPENDIXES 
10.1 
Appendix 1. Patient Screening Tool 
10.2 
Appendix 2. Enrollment Tool 
10.3 
Appendix 3. Daily Family Data Form 

ix 
 
10.4 
Appendix 4. Family Meeting Form 
10.5 
Appendix 5: Navigator Reflection sheet 
10.6 
Appendix 6: Patient Status Update 
10.7 
Appendix 7. Parent Survey 1 
10.8 
Appendix 8. Parent Survey 2 
10.9 
Appendix 9. Parent Survey 3 
10.10 Appendix 10. Parent Survey 4b 
10.11 Appendix 11. Parent Survey 5b 
10.12 Appendix 12. Parent Survey 4a 
10.13 Appendix 13. Parent Survey 5a 
10.14 Appendix 14. Parent Interview Guide 
10.15 Appendix 15. Thank You letter to parents 
10.16 Appendix 16. Cover letters for parent mailing/email after PICU discharge 
10.17 Appendix 17. Cover letter for HTM email for communication survey 
10.18 Appendix 18. HTM Communication Survey 
10.19 Appendix 19. HTM Post Family Meeting Survey 
10.20 Appendix 20. Cover letter for HTM email for study survey 
10.21 Appendix 21. HTM Study Survey 
10.22 Appendix 22. HTM Focus Group Guide 
10.23 Appendix 23. Post HTM Focus Group SurveyAppendix 24. PICU Handbook 
10.24 Appendix 25. Patient/Family Diary 
10.25 Appendix 26. Frontline Provider Sheet 
10.26 Appendix 27. Communication Log 
10.27 Appendix 28. Family Conference Chart Note 
10.28 Appendix 29. End-of-life Checklist 
10.29 Appendix 30. Bereavement Packet 
10.30 Appendix 31. Educational Brochure 
 
 
 
 

x 
 
Abbreviations and Definitions of Terms 
ANOVA 
Analysis of Variance 
APNs 
Advance Practice Nurses 
CAT-T 
Communication Assessment Tool-Team  
CAT 
Communication Assessment Tool  
CLT 
Central Limit Theorem 
Comer Children’s Hospital 
Chicago Medicine Comer Children’s Hospital  
CPR 
Cardiopulmonary Resuscitation 
 
CRRT 
Continuous Renal Replacement Therapy 
 
CSACD 
Collaboration and Satisfaction about Care Decisions  
DM 
Decision Making  
DRS 
Decision Regret Scale  
DSMC 
Data Safety Monitoring Committee  
ECMO 
Extracorporeal Membrane Oxygenation 
 
HIPAA 
Health Insurance Portability and Accountability Act  
HTMs 
Healthcare Team Members  
ICG 
Index of Complicated Grief   
ID 
Identification  
IES-R 
Impact of Event Scale – Revised  
ITT 
Intention-To-Treat  
Lurie Children’s Hospital 
Ann & Robert H. Lurie Children's Hospital of Chicago  
pFS-ICU 
Pediatric Family Satisfaction in the Intensive Care Unit 
PHI 
Person Health Information 
 
PIM2 
Pediatric Index of Mortality 2  
PICU 
Pediatric Intensive Care Unit  
PROMIS 
Patient Reported Outcomes Measurement Information 
System  

xi 
 
RCT 
Randomized Controlled Trial  
REDCap 
Research Electronic Data Capture 
SAP 
statistical analysis plan  
SWs 
Social Workers 
UPIRTSOs 
Unanticipated Problems Involving Risks to Subjects or Others  
 
 
 

xii 
 
Abstract 
 
Parents of children admitted to the PICU often face challenging decisions. Research demonstrates 
deficiencies in communication in the PICU which could impact decision making. This study team has 
developed a navigator-based intervention call PICU Supports. PICU Supports aims to provide the 
following types of support to parents of patients in the PICU: emotional; communication (between 
HTMs and parents/families as well as among HTMs); decision making; transition out of the PICU (i.e. 
discharge transitions to a non-PICU hospital bed, a long term care facility, or home); and information. 
Support is accomplished by navigator engagement with parents and HTMs and the guided use of 
navigator supported ancillary tools provided to parents and HTMs as needed.  During the patient’s PICU 
stay, the navigator activities and use of ancillary tools is directed by the family’s needs. Thus PICU 
Supports uses a predefined framework of activities and tools to provide individualized support directed 
by the needs of the parent and the patient situation. This research will test PICU Supports in the clinical 
setting. This will be accomplished by conducting a pilot study of PICU Supports at Ann & Robert H. Lurie 
Children's Hospital of Chicago (Lurie Children’s Hospital), followed by a randomized controlled trial (RCT) 
comparing the intervention, PICU Supports, to a control, parental receipt of  an educational brochure. 
The RCT will be conducted at Lurie Children's Hospital and at University of Chicago Medicine Comer 
Children’s Hospital (Comer Children’s Hospital). 

1 
 
1.0 BACKGROUND INFORMATION AND RATIONALE 
Patients admitted to the Pediatric Intensive Care Unit (PICU) may face death or significant morbidity. 
Three to eight percent of PICU patients die.1-8 PICU deaths include previously healthy children (e.g., 
those affected by trauma or infection) and children with complex chronic conditions,9-13 a group of 
approximately 500,000 children in the US increasingly seen in PICUs.14,15 With life-limiting or life-ending 
illnesses, parents face difficult, value-laden decisions. Past research with parents of children who died in 
the PICU and PICU healthcare team members (HTMs) shows that parents of dying patients face decisions 
that affect when, how, and sometimes if their child dies (e.g., withdrawing life-sustaining therapies or 
avoiding cardiopulmonary resuscitation).16  Research also shows that parents of dying patients make 
nonmedical decisions influencing bereavement (e.g., participating in memory-making activities or holding 
their child during death).16  
 
Parents of patients who survive long complicated PICU stays also face difficult life-changing decisions. 
PICU patients with long stays (>95th percentile for length of stay or >12 days) make up 36% of PICU days 
of care.17 Complicated admissions can occur for otherwise healthy patients, but more commonly involve 
the 53 – 67% of PICU patients with complex chronic conditions.13,18  For survivors of long, complicated 
PICU stays, parents may face decisions about: tracheostomy; initiating chronic ventilation; and/or 
accepting palliative care or limits on life-sustaining therapies, among other potentially life-altering 
medical decisions. Parents may also face complicated life choices about taking time off from work, 
spending less time with patients’ sibling(s), and talking (or not) to siblings about the patient’s illness. 
 
When decisions conflict with parents’ and patients’ wishes, patients may receive what families perceive 
as inappropriate care, sometimes too aggressive (such as invasive therapies which the parents feel 
impose more burdens than benefits), or sometimes not aggressive enough (such as when clinicians 
recommend withdrawal of life-support for a patient with a very low but present chance of survival 
despite parents’ desires to continue aggressive care). For all parents, decision making that does not fit 
their goals can result in dissatisfaction, decision regret, and psychological morbidity (e.g., anxiety, 
depression, post-traumatic stress disorder).19-21 For parents of children that die, pathological 
bereavement can result.19,22-25 Parental psychological morbidity can impact siblings and spousal 
relationships.26 HTMs may suffer from moral distress or job dissatisfaction as a result of value clashes 
with families.27-29 
 
Research demonstrates deficiencies in three lines of decision making (DM) communication in the PICU: 
1) communication from HTMs to parents; 2) communication from parents to HTMs; and 3) 
communication among HTMs. A study of PICU family conferences shows deficiencies in communication 
from HTMs to parents. In that work, 36 parents completed a validated communication assessment tool 
(CAT) 30 following 18 PICU family conferences.31  Only 29% of respondents gave an “excellent” rating to 
the item “talked in terms I could understand,” and only 61% to the item “Gave me as much information 
as I wanted.”31 Analysis of 22 audio-recorded family conferences demonstrated that four key elements 
of shared decision making32 were absent more than half the time: assessment of family understanding; 
assessment of the need for input from others; exploration of the family’s role in decision making; and 
eliciting the family’s opinion about decisions.31 Also, PICU parents and HTMs report shortcomings in 
communication among HTMs. In a study of bereaved PICU parents, communication and care 
coordination emerged as a priority for end-of-life care. Parents described inadequate care coordination 
among the professionals involved in their child’s medical care.33 Parents reported that poor 
communication eroded their trust in HTMs and created confusion.33   
 

2 
 
 
Some researchers and clinicians have proposed utilizing navigators to improve communication. Though 
various definitions exist, one definition of a navigator is "someone who understands the patient's fears 
and hopes, and who removes barriers to effective care by coordinating services, increasing the patient's 
chances for survival and quality of life."34 While developed for cancer patients, 35-37 the navigator 
concept has been successfully expanded to include different populations. Recently, White et al. 
demonstrated the feasibility, acceptability and perceived effectiveness of the Four Supports 
Intervention, which uses a “family support specialist” (akin to a navigator) to improve surrogate decision 
making for adult ICU patients.38 Physicians and surrogates reported that the intervention 1) improved 
the quality and timeliness of communication, 2) facilitated discussion of the patient’s values and 
preferences, and 3) improved the patient-centeredness of care. Thus there are data supporting the use 
of a navigator to improve communication and DM in an ICU setting. 
 
This study team has developed a navigator-based intervention call PICU Supports. PICU Supports was 
developed by adapting the Four Supports Intervention to the needs of the PICU. PICU Support reflects 
input from this project’s three study advisory groups: 1) parents (parents of children who have been 
cared for in an intensive care unit setting); 2) healthcare professionals who care for PICU patients 
(including nurses, social workers, chaplains, and non-PICU subspecialty attendings like oncology 
physicians); and 3) researchers with expertise in PICU communication and decision making. PICU 
Supports also reflects input from parents and HTMs who are not part of the study advisory groups, but 
who participated in interviews and focus groups. PICU Supports aims to provide the following types of 
support to parents of patients in the PICU: emotional, communication (between HTMs and 
parents/families as well as among HTMs); decision making; transition out of the PICU (i.e. discharge 
transitions to a non-PICU hospital bed, a long term care facility, or home); and information. This is 
accomplished by navigator engagement with parents and HTMs and the guided use of navigator 
supported ancillary tools provided to parents and HTMs as needed.  During the patient’s stay in the 
PICU, the focus of the navigator activities and use of ancillary tools is directed by the needs of the 
family. Thus PICU Supports uses a predefined framework of activities and tools to provide individualized 
support directed by the needs of the parent and the patient situation.  
 
The goal of this research is to test PICU Supports in the clinical setting. This will be accomplished by 
conducting a pilot study of PICU Supports at Ann & Robert H. Lurie Children's Hospital of Chicago (Lurie 
Children’s Hospital), followed by a randomized controlled trial (RCT) comparing the intervention, PICU 
Supports, to a control, parental receipt of  an informational brochure. The RCT will be conducted at Lurie 
Children's Hospital and at University of Chicago Medicine Comer Children’s Hospital (Comer Children’s 
Hospital).  
 
2.0 STUDY OBJECTIVES 
The purpose of this study is to test the use and efficacy of PICU Supports in the clinical setting. The study 
will accomplish the following aims: 
Aim 1. Determine the feasibility, perceived acceptability, and effectiveness of PICU Supports 
x 
Hypothesis 1a. Implementation of PICU Supports is feasible. 
x 
Hypothesis 1b. Parents perceive PICU supports as acceptable and effective. 
x 
Hypothesis 1c. HTMs perceive PICU Supports as acceptable and effective. 

3 
 
Aim 2. Test the impact of PICU Supports during and after PICU discharge on parent outcomes 
(satisfaction with DM, decision regret, anxiety, depression, post-traumatic stress, and health-related 
quality of life, and complicated bereavement). 
x 
Hypothesis 2a. PICU Supports improves parental satisfaction with DM. 
x 
Hypothesis 2b. PICU Supports decreases short term parental decision regret. 
x 
Hypothesis 2c. PICU Supports decreases short term parental anxiety, depression, symptoms of 
post-traumatic stress, health-related quality of life, and complicated bereavement. 
 
Aim 3. Test the impact of PICU Supports on parent and HTM assessments of communication and team 
collaboration. 
x 
Hypothesis 3a. PICU Supports improves parental assessments of communication between HTMs 
and parents, and of team collaboration. 
x 
Hypothesis 3b. PICU Supports improves HTM assessments of team collaboration. 
3.0 INVESTIGATIONAL PLAN 
3.1 General Schema of Study Design 
Part 1 of the study will be a pilot conducted at the Lurie Children's Hospital PICU and/or cardiac 
intensive care unit. During the pilot, enrolled participants will receive the intervention, PICU Supports. 
Part 2 of the study will be a RCT. During the RCT, enrolled participants will be randomized to receive 
either the intervention or an informational brochure. The RCT will begin at Lurie Children's Hospital and 
then expand to Comer Children’s Hospital after the protocol is reviewed and approved by the Comer 
Children’s Hospital IRB. The intervention can take place in the PICU and/or cardiac intensive care unit. 
Hereafter, the PICU and cardiac intensive care unit will be referred to as the PICU. 
3.2 Study Duration and Number of Participants Projected.  
Enrollment for the pilot study will continue for up to four months, or until the parent(s) of 60 patients 
are enrolled.  Enrollment for the RCT will begin approximately two months after completing enrollment 
for the pilot study or earlier if possible. Enrollment for the RCT will continue until the goal of enrolling 
parents of 404 patients is met.  
Participation of parents enrolled in the study will continue from the point of signing consent until 
completion of the final study survey, up to 3-5 months after discharge from the PICU.  For the pilot we 
anticipate enrolling at least 60 families, but up to 120 parents depending on how many parents per 
patient enroll. For the RCT we anticipate enrolling at least 404 families, but it could be as many as 808 
parents depending on how many parents per patient enroll.  
Patient participation will continue from the point of parental consent and patient assent (if applicable) 
until discharge from the PICU.  

4 
 
The duration of participation from HTMs will depend in which part of the study a particular HTM 
participates. The total number of HTMs that will be enrolled is unknown as it will depend on the number 
of HTMs involved in the care of PICU patients at each site, the number of HTMs participating in focus 
groups/interviews, and the number of eligible HTMs care for case patients.   
3.3 Study Populations 
This study will include three groups of participants: case patients; parents of case patients; and HTMs 
who participate in the care of PICU patients. 
3.3.a. Case Patients. Case patients are not the main study participants. Rather, parents and HTMs are 
the main study participants. However, clinical data will be collected about case patients. The definition 
of a “case patient”, with associated inclusion and exclusion criteria, will determine parental eligibility 
and, in some cases, HTM eligibility for study participation. Case patients are defined as patients < 18 
years of age admitted to the PICU whose parents are English or Spanish-speakers and who:  
x 
are likely to require PICU care for at least 24 hours from the time a study team member inquires 
about the patient’s projected length of stay in the PICU (as determined by a member of the 
patient’s PICU team) or 
x 
have a Pediatric Index of Mortality 2 (PIM2) score ≥ 4% (a PIM2 score predicts risk of mortality 
based on clinical data collected at the time of admission to the PICU)39  
 
Case patients will be included in the study if one of his/her parents agrees to participate in the study and 
signs a written consent form.  
 
3.3.b. Parents of Case Patients.  
Inclusion criteria for parents of case patients: 
x 
Parent of an eligible case patient. 
x 
PICU attending gives permission to approach the parent about the study. 
x 
Parent is an English or Spanish speaker. Following institutional review board (IRB) approval of 
our study research plan at the lead site (the Lurie Children’s Hospital IRB), we will have our 
materials translated to Spanish or utilize previously translated versions of tools included in our 
materials. After approval of these materials by the Lurie Children's Hospital IRB (and later the 
Comer Children’s IRB) we will include Spanish speakers. 
x 
Parent provides written consent for participation. 
 
Exclusion criteria for parents of case patients: 
x 
PICU attending does not give permission to approach the parent about the study  
x 
Parent is not an English or Spanish speaker. The study is restricted to English and Spanish 
speakers because it is not practical or feasible to have our materials translated into all other 
potentially needed languages and to have interviewers fluent it all other potentially needed 
languages. 
x 
Parent does not provide written consent to participate. 

5 
 
x 
The case patient does not provide assent (if able to provide assent).   
 
3.3.c. Healthcare Team Members (HTMs). HTMs who care for PICU patients will be included in the study 
in four possible ways:  
1. The pre-post HTM assessment of team communication – This group will include as many 
clinicians in the following groups as possible (identified by the site principal investigator): PICU 
physicians (attendings and fellows); PICU bedside nurses; PICU Advance Practice Nurses (APNs); 
hospitalists; subspecialty physicians who consult on PICU patients; subspecialty APNs who 
consult on PICU patients; PICU respiratory therapist; PICU physical/occupational/speech 
therapists; and social workers (SWs), chaplains, and case managers who follow PICU patients.  
2. The verbal feedback/assessment of the intervention – This group will include a convenience 
sample of HTMs who care for PICU patients. The same people eligible for the pre-post HTM 
assessment of team communication will be eligible for this component of the study.  
Participants will be asked to take part in a focus group or an interview to discuss the 
intervention during or after the pilot study, or during or after the RCT.  
3. The written feedback/assessment of communication between healthcare team members and 
families during a family meeting for a case patient. The participants in this component will be 
identified by the site principal investigator as a subgroup of providers who participated in a 
family meeting. This subgroup will include the following HTMs: PICU attending; PICU fellow; 
social worker (if involved); chaplain (if involved); bedside nurse; PICU resident, APN or 
hospitalist; and one to two subspecialty attendings.  
 
4. The written feedback/assessment of the intervention. The same people eligible for the pre-post 
HTM assessment of team communication will be eligible for this component of the study. The 
actual participants in this component, however, will be a subgroup defined by case patients and 
identified by the site principal investigator. This subgroup will include the following HTMs caring 
for the case patient at the time of discharge from the PICU: PICU attending; PICU fellow; social 
worker (if involved); chaplain (if involved); bedside nurse; PICU resident, APN or hospitalist; and 
one to two subspecialty attendings.  
 
4.0 STUDY PROCEDURES 
 
4.1. Pre-post HTM assessment of team communication.  
 
Before the pilot starts and after completing the randomized controlled trial, HTMs will be asked to 
complete a survey, the Healthcare Team Member Communication Survey (see section 4.7.c). This survey 
will be emailed to potential participants. Participants will complete the survey online using the 
electronic data capture system REDCap (Research Electronic Data Capture) (see section 5.2.).  
 
4.2. Screening.  
Each weekday a study team member will identify case patients via chart review. For  screening purposes, 
the following information on each PICU patient will be collected: sex, date of birth, age, date of 

6 
 
admission to the PICU, parents’ language, clinical data required to calculate a PIM2 score, and type of 
patient illness (See Patient Screening Form). If necessary, a study team member will ask one of the 
patient’s physicians (attending, fellow, resident, or APN/hospitalist) if he/she expects the patient to be 
discharged from the unit that day or the following day. Once deemed eligible for the study, a study team 
member will ask permission from the patient’s PICU attending or fellow to approach the patient’s 
parents for participation in the study. We will record data regarding which parent(s) is/are approached 
for study participation and, of those approached, who provides consent.   
 
4.3. Consent.  
 
4.3.a. Parents of Case Patients. After determining eligibility, a study team member will approach eligible 
parents to obtain consent. One or both parents may consent to study participation (See 7.5.b for 
procedures for obtaining consent). 
 
4.3.b. Case Patients. Most case patients in the study will not be able to provide assent either because of 
their age, developmental status, and/or medical condition. However, if in the judgment of the study 
team, a case patient is capable of providing assent, a study team member will obtain oral assent (after 
obtaining consent from a parent) and document that in the chart.  
 
4.3.c. Healthcare Team Members. The consent process for HTMs depends on the component of the 
study in which they are participating (See 7.5.c for procedures for obtaining consent). 
 
4.4. Randomization.  
 
All participants in the pilot study will receive the intervention, and thus the pilot study does not require 
a pre-generated allocation list. During the RCT, participating families (case patients and parents) will be 
randomized (1:1) to receive either the intervention or an informational brochure (control). 
Randomization will occur after consent is obtained. The randomization algorithm will employ a random 
number generator with a pre-specified seed (in order to ensure reproducibility) to generate a list of 
group (intervention versus control) assignments.  A permuted blocking scheme will be used.  The pre-
generated allocation list will be uploaded into the electronic data capture system, REDCap (see 5.2. for 
information about REDCap) such that only the study statistician(s) have access to any future 
assignments.  Following consent and enrollment of a given participating family, the study coordinator 
will use the randomization functionality of the electronic data capture tool that will pull the next 
sequential assignment from the uploaded pre-generated list, and the tool will display a pop-up window 
to indicate whether the family will receive the intervention or the control.  Additionally, a corresponding 
“allocation” field will be populated with the assigned group for that family so as to capture allocation in 
the research database.   
 
 
 
 

7 
 
4.5. Intervention Details. 
 
The components of the intervention, PICU Support (also referred to in the study materials as the PICU 
Supports program) can be divided into two categories: navigator activities and ancillary tools. The 
following subsections describe the intervention that pilot study participants and RCT participants 
randomized to the intervention arm will receive. All of the intervention activities are meant to provide 
parental support. As such, if a parent is not interested in a particular part of the intervention, his/her 
wishes regarding not engaging in certain activities or utilizing a particular tool will be respected.  Also, 
there may be circumstances when an existing team member is accomplishing a task of the navigator or 
an existing program is accomplishing the same goal of one of the ancillary tools. In such cases, the 
existing team member and/or existing process will continue and the navigator will provide support on 
an “as needed” basis.   
 
4.5.a. Navigator activities. The navigator will engage in the following activities (provided they are of 
interest to the family): 
- 
Preliminary visits. The navigator meets with the HTMs to obtain pertinent information about the 
patient, family, and medical situation. The navigator meets with the family to introduce 
him/herself, explain his/her role, get acquainted with the family, help orient the family to the 
PICU, and identify key HTMs with whom the family has a relationship. The navigator provides 
relevant information to the PICU HTM regarding his/her visit with the family.  
- 
Weekday visits. The navigator obtains pertinent information about the patient, family, and 
medical situation from the HTMs. The navigator meets with the family (in person or via phone). 
These meetings have four goals: 1) identify and address (if possible) family needs; 2) assess 
family perception of communication between the family and HTMs; 3) assess family perception 
of communication among HTMs; and 4) provide general consistent support. These discussions 
may be an opportunity for the navigator to help parents identify goals (see comments about the 
diary below) and inform parents about logistics in the PICU (e.g., staffing changes).  The 
navigator will make efforts to support the family’s general and communication needs via 
conversations with the family and HTMs.  The navigator provides relevant information to the 
PICU HTMs regarding his/her visit with the family. 
- 
Support family meetings. The navigator will organize weekly meetings between the family and 
HTMs. This will involve: identifying a time/day; including the appropriate family and HTMs; 
finding an appropriate space; meeting with the family and HTMs (separately) prior to the 
meeting to identify goals; participating as needed in the meeting; meeting with the family and 
HTMs (separately) after the meeting to process and identify unmet needs and help implement 
next steps (if indicated); and document the meeting in the medical record.  
- 
Support discharge/end-of-stay activities. The navigator will provide directed support at the time 
of discharge to families and HTMs, recognizing that patients who leave the PICU will either be 
transferred to a non-PICU bed, discharged to home or a long-term care facility, or die in the 
PICU. This support will be accomplished through: 1) assessing family comfort with the situation; 
2) identifying specific family needs pertaining to leaving the PICU; 3) providing appropriate 
information to the family about issues that may arise after leaving the PICU; 4) facilitating 

8 
 
logistics of transfer/discharge; and 5) checking in with families after discharge from the PICU. 
Some of these activities may occur during the patient/family stay in the PICU as opposed to just 
at the immediate time of discharge. As such, the navigator will assess the family discharge needs 
as part of the weekday visits, when appropriate.  The Navigator will continue to meet with a 
family transferred out of the PICU to a regular hospital bed, if at the time of discharge from the 
PICU the Navigator feels that continuous support of the family would be of value to the family. 
In such cases, the Navigator will ask the family if they would like continued support and discuss 
this with the families medical team. The Navigator may also continue to provide support and 
weekday family visits if requested by the family 
 
4.5.b. Ancillary Tools. PICU Supports includes tools meant to be used as needed by the family (with 
support from the navigator) or by the navigator to support HTM communication.  
- 
PICU Handbook. This is a book created by the study team to give families basic information 
about how to support themselves in the PICU and about the kinds of medical issues sometimes 
encountered in the PICU. It is meant to be used as a resource, such that some people may never 
refer to it, others may use it often, and still others may use it only as situations arise.  
- 
Patient/Family Diary. This is included in the PICU Handbook. Additional pages can be provided to 
families as needed. The diary provides a structured place for families to keep track of what is 
happening with their child and to consider the needs and/or goals they have for their child 
and/or themselves. 
- 
Frontline provider sheet. This sheet provides a succinct summary of the family’s psychosocial 
needs. The navigator will provide this sheet to the “frontline provider” (PICU team resident or 
APN or hospitalist) weekly or more if needed. The navigator will convey this information to the 
PICU attending as needed. 
- 
Communication log. This sheet, to be kept at the patient’s bedside, is a list of non-PICU 
providers who visit the patient and/or family during the day. Each provider will be asked to fill in 
the log when he/she visits the patient and/or family.   
- 
End-of-life checklist. This is a checklist of activities that the navigator should ensure are being 
tended to by someone on the HTM and/or him/herself.  
- 
Bereavement packet. This is a packet of information to be given to families of children who die 
in the PICU. It provides helpful information relevant to parental and family bereavement.  
- 
Ancillary information resources. The navigator will provide families with additional resources as 
needed/requested to ensure they have adequate information about the issues pertinent to their 
child. Given the heterogeneity of medical issues cared for in the PICU, these resources will be 
identified on an as needed basis. Examples of such resources include: websites that provide 
information about the child’s disease and/or educational materials about the child’s medical 
problems. All ancillary information resources will be approved by the site PI prior to being given 
to a parent.  
 
4.5.c. Navigator documentation of intervention activities. Throughout the PICU admission, the navigator 
will document his/her activities and provide feedback about his/her experiences via three mechanisms: 
the Daily Family Data Form, the Navigator Reflection Sheet, and the Family Meeting Form. The Daily 

9 
 
Family Data Form will be completed daily, the Navigator Reflection Sheet will be completed at the time 
of data collection from the participants, and the Family Meeting Form will be completed after a family 
meeting. These data will be used to assess navigator fidelity to the intervention. They will also provide 
information about which components of the intervention parents utilize and the time point(s) during the 
admission in which they are utilized.  
  
 
4.6. Control details. 
 
The control group will receive a brochure with general information about the PICU after consent has 
been obtained. All other care and support for the patients, parents, and family in the control group will 
be according to the standard of care at each participating site.  
 
4.7. Surveys. 
 
Data collection from parents and HTMs will involve a series of surveys consisting of tools described in 
Table 1 below.  
Table 1. Tools used in Study Surveys.  
Name 
Domains 
Pediatric Family Satisfaction in the 
Intensive Care Unit, pFS-ICU40,41 
Provides an assessment of overall satisfaction as well as 
satisfaction with care and satisfaction with DM. 
Collaboration and Satisfaction about 
Care Decisions (CSACD)42 
Measures healthcare team collaboration in ICUs. 
Support-Short Form 8a43* 
Measures social support 
Decision Regret Scale (DRS)44 
Measures decision regret; decision harm; and decision 
appropriateness.  
Anxiety-Short Form 8a45*  
Measures symptoms of anxiety. 
Depression-Short Form 8a45* 
Measures symptoms of depression. 
Impact of Event Scale - Revised 
(IES-R)46,47 
Measures symptoms of post-traumatic distress. 
Subscales include: intrusion, avoidance, and hyper-
arousal. 
Index of Complicated Grief  (ICG)** 48 
Designed to assess specific symptoms of grief.  
Global Health49* 
Measures overall health-related quality of life.  
Connor-Davidson Resilience Scale 25 
(CD-RISC-25) 
Measures resilience 
Communication Assessment Tool-
Team (CAT-T)30,50,51 
Measures staff-patient communication. 
Acceptability and Perceived 
Effectiveness of Intervention*** 
Measures acceptability and perceived effectiveness of 
the PICU Supports Intervention.  
* Indicated Patient Reported Outcomes Measurement Information System (PROMIS) measure 
** Only for bereaved parents 
** Created for this project based on a similar tool used in with the Four Supports pilot study38 
 

10 
 
4.7.a. Surveys collected from parents receiving the intervention. Parents will be asked to complete a 
series of surveys at various time points during and after their child’s admission in the PICU.  
1. Parent Survey 1. (Distributed/collected at the time of consent). This survey includes items about 
parent: demographics; previous experience in an ICU setting; religiosity/spirituality; status of 
social support (using the Support-Short Form 8a); parental anxiety, depression and global health 
(using the Anxiety-Short Form 8a, the Depression-Short Form 8a, and the Global Health form 
respectively); and resilience. Religiosity/spirituality will be assessed by asking two “yes/no” 
questions: “Is religion an important part of your daily life?” and ‘‘Do you consider yourself a 
spiritual person?’’ These items have been used in previous studies of religiosity and 
spirituality.52,53  
2. Parent Survey 2. (Distributed/collected between five and seven days after PICU admission, weekly 
for one month then monthly during the patient’s PICU admission). This survey includes items 
asking about parental satisfaction with care and decision making in the PICU (using the pFS-ICU) 
and about parental perception of team collaboration in the PICU (using the CSACD). 
3. Parent Survey 3. (Distributed/collected after family meetings). This survey includes items asking 
about parental perception of communication during the family meeting (using the CAT-T and 
additional general questions). Family conferences will be identified based on chart review and 
input from the navigator. 
4. Parent Survey 4. (Distributed/collected from parents of surviving patients within 72 hours of PICU 
discharge, between three and five weeks after PICU discharge, and between three and five 
months after PICU discharge). This survey includes items asking about: parental satisfaction with 
care and decision making in the PICU (using the pFS-ICU); parental perception of team 
collaboration (using the CSACD); parent decision regret (using the DRS); parent anxiety, 
depression, PTSD, and global health (using the Anxiety-Short Form 8a, Depression-Short Form 
8a, Impact of Event Scale – Revised, and Global Health forms, respectively); and parent 
perception of the intervention acceptability and effectiveness. 
5. Parent Survey 5. (Collected from bereaved parents between three and five weeks after PICU 
discharge, and between four and five months after PICU discharge). This survey includes the same 
items in Parent Survey 4 as well as additional items from the pFS-ICU about end-of-life care and a 
measure of complicated grief (using the ICG).  
 
4.7.b. Surveys collected from parents not receiving the intervention. Parents not receiving the 
intervention will be asked to complete the same series of surveys at the same time points during and 
after their child’s admission in the PICU with the following differences. 
1. Parent Survey 1. No difference. 
2. Parent Survey 2. No difference. 
3. Parent Survey 3. No difference in the survey. Family meetings will be identified based on chart 
review.  
4. Parent Survey 4a. This survey will not include items about the intervention acceptability and 
effectiveness. It will include one item about the usefulness of the brochure.   
5. Parent Survey 5a. This survey will not include items about the intervention acceptability and 
effectiveness. It will include one item about the usefulness of the brochure.   

11 
 
 
 
4.7.c. Surveys collected from Healthcare Team Members. 
1. Healthcare Team Member Communication Survey. (Collected before the pilot study and after 
the randomized control trial). This survey asks participants for basic demographic information 
and about team communication in the PICU (using the CSACD). 
2. Healthcare Team Member Post Family Meeting Survey (Collected after a family meeting for a 
case patient enrolled in the study).  This survey asks participants for feedback about 
communication between the healthcare team and family during a family meeting. The following 
HTMs present for a family meeting will be asked to complete this survey: PICU attending; PICU 
fellow; social worker (if involved); chaplain (if involved); bedside nurse; PICU resident, APN or 
hospitalist; and subspecialty attendings. The site PI will use his/her discretion to identify the 
appropriate HTMs for a case patient. 
3. Healthcare Team Member Study Survey. (Collected at the time of discharge of case patients). 
This survey includes items asking about the participants role in the hospital (e.g. physician or 
social worker); team collaboration (using the CSACD); and perception of the intervention 
acceptability and effectiveness. The following HTMs caring for a case patient at the time of 
discharge from the PICU will be asked to complete this survey: PICU attending; PICU fellow; 
social worker (if involved); chaplain (if involved); bedside nurse; PICU resident, APN or 
hospitalist; and subspecialty attendings. The site PI will use his/her discretion to identify the 
appropriate HTMs for a case patient, in the event that a HTM is caring for a case patient on the 
day of discharge who is relatively new to the case patient (e.g., a new attending takes over the 
care of the patient on the day of discharge).  
 
4.8. Distribution/Collection of Surveys. 
 
4.8.a. Parent surveys distributed/collected in the hospital. Parent surveys distributed/collected during 
each participating patient’s admission will use a written format. A study team member will give 
participating parents the survey and request that the completed survey be placed in an envelope and 
returned to a central location or given to the bedside nurse for a study team member to pick up. 
 
4.8.b. Parent surveys distributed/collected after PICU discharge. Parent surveys collected after the 
patient’s PICU discharge can be completed in a written format or electronically. Parents who request the 
electronic format will provide an email address and will be sent an email with instructions for 
completing the survey. This will be sent using a functionality of REDCap, the electronic data capture tool 
for this study (see data collection section 4.11). Two email reminders will be sent (1.5 weeks and 2.5 
weeks after the first email) if the survey is not completed. For parents who request a written format, 
surveys and a self-addressed, stamped envelope will be sent via mail. A study team member will follow-
up with parents by phone no more than two times (2.5 and 3.5 weeks after the survey is mailed) to ask 
for their participation if the survey is not received. Parents will also have the option of completing the 
survey over the phone with a member of the study team. If a survey is not returned within four weeks of 

12 
 
the first mailing and there has been no direct contact made with the participant, a second survey will be 
mailed to the participant without additional attempts to contact parents by phone.  
 
4.8.c. The Healthcare Team Member Communication Survey. Eligible HTMs will receive information 
about the study and The Healthcare Team Member Communication Survey via an email communication 
from REDCap. Two subsequent emails will be sent 1 week and 2 weeks after the initial email to remind 
potential participants about the study if the surveys are not completed.  
 
4.8.d The Healthcare Team Member Post Family Meeting Survey. Eligible HTMs will the Healthcare Team 
Member Family Meeting Survey in a written format from a study team member or via an email 
communication from REDCap. If the potential participant completes the survey in written format they 
will be asked to complete the survey and return it in an envelope provided either directly to a study 
team member or to a central location. Potential participants who receive the survey via REDCap, will be 
asked to complete the survey online. 
 
 
4.8 e. . The Healthcare Team Member Study Survey. Eligible HTMs will receive the Healthcare Team 
Member Study Survey in a written format from a study team member or via an email communication 
from REDCap. If the potential participant completes the survey in written format they will be asked to 
complete the survey and return it in an envelope provided either directly to a study team member or to 
a central location. Potential participants who receive the survey via REDCap, will be asked to complete 
the survey online. 
 
 
4.9. Interviews and Focus Groups. 
 
4.9.a. Parent interviews. Parents will have the option to participate in an audio-recorded, semi-
structured interview (lasting about an hour) within five days of PICU discharge (for parents of surviving 
case patients) or between three and five weeks of discharge (for parents of case patients who die in the 
PICU). We will wait at least three weeks after a child’s death to interview bereaved parents out of respect, 
as others have done.54 All efforts will be made to conduct interviews with parents of survivors in the 
hospital. If necessary, interviews with parents of survivors can be done via phone. Interviews with 
bereaved parents will be conducted via phone to be sensitive to time and geographic limitations. A letter 
or email to bereaved parents asking them to complete Parent Survey 5 will also indicate that someone will 
contact them by phone to ask them if they would like to participate in an interview. It will give parents an 
option of sending back a form within 2 weeks indicating that they do not want to be called about an 
interview. If this form is received, parents will not be called to request participation in an interview or to 
request that they complete Parent Survey 5. Otherwise, a study team member will call parents up to two 
times (2.5 and 3.5 weeks after the survey is mailed) to ask for their participation in an interview. If both 
parents would like to participate, each parent will be interviewed separately. Interviewers will use a guide, 
allowing for modifications as described above.  The planned topics for these interviews include 
perception of care coordination among HTMs; discussion of decisions faced in the PICU; perception of 

13 
 
parental involvement in DM; emotional support from HTMs; and acceptability and perceived 
effectiveness of the navigator (for those randomized to receive the intervention) or the brochure (for 
those randomized to the control arm). See attached parent interview guide.  
 
4.9.b. HTM Focus Group/Interviews. We will attempt to convene focus groups involving HTMs at least once 
during or after the pilot study (at Lurie Children's Hospital), and at least once during or after the RCT (at 
both study sites). All focus groups and interviews will be conducted at the study site hospital and audio-
recorded.  At each time point (during or after the pilot and during or after the RCT), we will attempt to 
convene three focus groups: one with PICU attendings, fellows, and APNs or hospitalists; one with 
subspecialists who cared for patients who received the intervention; and one with non-physician/non-
APNs who cared for patients who received the intervention (e.g., case managers, socials workers, 
chaplains, bedside nurses). During the focus groups, participants will be asked to comment on the 
intervention acceptability and perceived effectiveness, and impact on HTM workflow (see attached focus 
group guide). After the focus group the HTMs will be asked to complete a short survey requesting 
demographic information. For Healthcare team members that wish to provide their feedback but are 
unable to attend focus groups due to scheduling conflicts, we will offer one on one interviews between the 
potential participant and  a member of the research team.  Individuals that participate in interviews will 
also be asked to complete the same short survey requesting demographic information and the research 
team member will use the Focus Group guide as the guide for the discussion during the interview 
(Appendix 20 and 21). 
 
4.10. Plan for PICU readmissions of case patients during the study period.  
 
Families who participate in the pilot will not be eligible for the RCT. During the RCT, if a case patient 
whose parent(s) previously consented to participate in the study is admitted to the PICU more than once 
during the study and the family was part of the pilot study or randomized to the intervention group 
during the RCT, the parent(s) will have the option to continue to receive the intervention on all 
subsequent admission. However, we will not collect surveys on PICU readmissions.  Families who are 
randomized to the control group will receive usual care on PICU readmissions.  
 
4.11. Data collected. 
 
4.11.a. Patient Screening Information. We will collect the following information about all patients in the 
PICU on weekdays: sex, date of birth, PICU admission date; anticipated length of stay (per attending), 
components needed to calculate the PIM2 score, parent’s primary language, and type of patient illness 
(see Patient Screening Tool). 
 
4.11.b. Case Patients. For case patients whose parents give consent, we will collect the following 
information via chart review: date of hospital admission; date of PICU and hospital discharge;  admission 
diagnoses/problem list; type of underlying illness; events during their PICU admission (including new 
tracheostomy tube placement, new gastrostomy tube placement, new chronic ventilations, new DNAR 
or limitation of therapy orders, new involvement of palliative care, use of cardiopulmonary resuscitation 

14 
 
(CPR), use of Extracorporeal Membrane Oxygenation (ECMO), use of continuous renal replacement 
therapy (CRRT)); sub-specialists involved in the patient’s care; and location of discharge.  (See  Patient 
Status Update).    
 
4.11.c. Survey data from parents. We will collect Parent Surveys 1 – 5 and 4a and 5a. (See sections 10.3-
10.9 for content of surveys).  
 
4.11.d. Survey data from HTMs. From HTMs we will collect pre- and post-study surveys (the HTM 
Communication Survey), surveys after a family meeting, and discharge surveys (the HTM Study Survey) 
as described above; and demographic data following focus groups/interviews (see sections 10.11, 10.12, 
10.14 for content of surveys).  
 
4.11.e. Interview data from parents. Audio-recordings of parent discharge one-on-on interviews will be 
collected. 
 
4.11.f. Focus group/ Interview data from HTMs. Audio-recordings of HTM focus groups/interviews will 
be collected.  
 
4.11.g. Navigator documentation of intervention activities. The navigator will keep records of his/her 
activities via two mechanisms; the Daily Family Data Form and the Family Meeting Form (see 10.15 and 
10.16). 
 
4.11.h. PICU Supports Ancillary Tools. The PICU Supports ancillary tools will not be collected as part of 
data from this study and will not become part of the medical record. For example, the parent diary 
sheets will not be collected, the frontline provider sheets will not be collected or included in the medical 
record, and the communication log will not be collected or included in the medical record.  
 
 

15 
 
Table 2. Study Data Collection 
Data Collected 
Data 
Source 
Pre/Post 
study 
At PICU 
Admission 
Daily 
during 
PICU stay 
3-5 days 
from PICU 
Admission 
During 
PICU Stay* 
After 
Family 
Meeting 
At PICU 
Discharge 
3-5 weeks 
After PICU 
Discharge 
3-5 
months 
After PICU 
Discharge 
Patient Screening 
Tool 
Medical 
Record 
 
X 
 
 
 
 
 
 
 
Enrollment Tool 
Medical 
Record 
 
X 
 
 
 
 
X 
 
 
Parent Survey 1 
Parent(s) 
 
 
 
X 
 
 
 
 
 
Parent Survey 2 
Parent(s) 
 
 
 
 
X 
 
 
 
 
Parent Survey 3 
Parent(s) 
 
 
 
 
 
X 
 
 
 
Parent Survey 4/4a 
Parent(s) 
 
 
 
 
 
 
X 
X 
X 
Parent Survey 
5/5a*** 
Parent(s) 
 
 
 
 
 
 
 
X 
X 
Parent Interview 
Parent(s) 
 
 
 
 
 
 
X 
X*** 
 
HTM 
Communication 
Survey 
HTMs 
X 
 
 
 
 
 
 
 
 
HTM Post Family 
Meeting Survey 
 
 
 
 
 
 
X 
 
 
 
HTM Study Survey 
HTMs 
 
 
 
 
 
 
X 
 
 
HTM Focus 
Group/Interview** 
HTMs 
 
 
 
 
 
 
 
 
 
Daily Family Data 
Form 
Navigator 
 
 
X 
 
 
 
 
 
 
The Navigator 
Reflection Sheet 
Navigator 
 
X 
 
 
X 
 
X 
 
 
Patient Status 
Update 
Medical 
Record 
 
 
 
 
X 
 
 
 
 
Family Meeting 
Form 
Navigator 
 
 
 
 
 
X 
 
 
 
*Every week x 4 then monthly 
**To be done during the pilot and during the RCT at unspecified times.  
***For bereaved parents

16 
 
5.0. DATA COLLECTION AND MONITORING MANAGEMENT 
 
5.1. Maintaining Study Documents. 
 
Study records, including completed written surveys, report forms, and consent forms, will be 
maintained in a secured manner as determined by each site’s IRB. 
 
5.2. Data entry. 
All quantitative data will be managed and stored using the research-focused electronic data capture 
system REDCap (Research Electronic Data Capture).55  REDCap is a secure, web-based application for 
building and managing online surveys and databases. We will use the REDCap server located at 
Northwestern University as part of the Northwestern University Biomedical Informatics Center (NUBIC) 
and the Northwestern University Clinical and Translational Sciences Institute (NUCATS).  Each site will 
enter all data into REDCap except for audio recordings of parent interviews and HTM focus groups or 
interviews. The navigator at each site will enter data directly into REDCap. 
All qualitative data with patient identifiers will be maintained at the study site of origin. Recordings will 
be transcribed by an outside transcription company, Voss Transcription Inc. A study team member will 
remove all personal identifying information from the recordings and download anonymized transcripts 
into Dedoose (an online secured, password protected, encrypted qualitative software program). 
5.3. Data Safety and Monitoring. 
 
The individuals responsible for data safety and monitoring will be Drs. Michelson (PI) and the statistical 
team), and an independent Data Safety Monitoring Committee (DSMC). A monthly report about study 
progress, adverse events, and protocol deviation(s) will be compiled. Protocol adherence will be 
monitored by tracking completion of the core PICU Supports components (see table 4) for the 
intervention arm, and distribution of the educational brochure (for the control arm). Return of study 
surveys will also be tracked (see table 3). The Research Advisors will review the reports regularly for 
recruitment, data quality, completeness of follow-up, protocol deviations, and availability of resources 
for study continuation and completion. Periodic reports on these issues will be submitted to the 
relevant IRBs, the parent advisors, and the HTM advisors, as well as the DSMC). 
We will have an independent DSMC chaired by Dr. Jeffrey Burns, chief of Critical Care Medicine and 
Edward and Barbara Shapiro Chair in Critical Care Medicine at Children’s Hospital, Boston. Dr. Burns is 
an expert in ethics and has extensive experience conducting research on PICU end-of-life care DM.4,56-59 
The DSMC will include a parent and a non-physician HTM to be named prior to starting the RCT. During 
the RCT, interim reports on enrollment, outcomes, and adverse events will be made available to the 
chair of the DSMC for review after six and 12 months of data collection and after data collection is 
complete, or sooner if requested. The frequency of DSMC meetings will be self-determined but not less 
than annual. The DSMC will monitor the study for overall study progress, data collection, fidelity to the 

17 
 
intervention, and unanticipated problems or complaints (see section 7.1.a). The DSMC can stop the 
study if evidence of substantial harm to the research subjects emerges. A letter summarizing DSMC 
activity and findings will be filed with the IRB at each participating institution after each DSMC meeting.  
6.0 STATISTICAL CONSIDERATIONS 
 
6.1. Sample Size. 
 
6.1.a Pilot study. 
Enrollment for the pilot study will continue for between three and four months or until parents of 60 
patients are enrolled. No formal sample size calculations were performed for the pilot study as the 
purpose of the study it to determine whether the intervention, survey, data collection processes, or 
statistical analysis plan require any modifications prior to implementing the RCT. A sample size of 60 will 
allow us to estimate population parameters in accordance with the Central Limit Theorem (CLT), thus 
providing further insight into assumptions and analyses for the RCT. 
 
6.1.b. Randomized Controlled trial. 
The primary outcome (for which we determined sample size) for the RCT is percentage of “excellent” 
scores in the DM domain of the pFS-ICU between three and five weeks from discharge. The unit of 
randomization is the family, defined as the patient plus one or both parents.  Data from the FS-ICU 
(adult version) shows that percentage of “excellent” scores for the DM component range from 31.7% to 
65.4% with an average of 49.8% and a standard deviation of 17.0%.60 We propose that a 10% difference 
in scores (e.g., a difference in score from 50% to 60%) would constitute a clinically significant change. 
Sample was calculated based on the independent two-sample t-test (assuming data from just one 
parent for each family). Note this is a conservative approach as we anticipate more than one 
observation available for a proportion of the participating families. Assuming a 5% level of significance 
for a two-sided test and a standard deviation of 17%, the independent two-sample t-test would have 
approximately 80% power to detect a 7% (an effect size of 0.41) absolute difference in percentage of 
“excellent” responses to the DM domain with 82 families in each arm This would give an effect size of 
0.41 (difference of 7% / standard deviation of 17%). 
We anticipate that approximately 400 and 250 patients/year, at Lurie Children’s Hospital and Comer 
Children’s Hospital respectively, will meet our inclusion criteria. Planning for 18 and 14 months of 
enrollment at Lurie Children’s Hospital and Comer Children’s Hospital respectively, there will be a total 
of 1012 eligible patients. If we anticipate 50% participation rate (a conservative estimate, given 66% 
participation for our family conference study) we will enroll 506 patients (253/arm).  Anticipating 20% 
loss to follow-up, we will have data from 202 families/arm, more than sufficient to identify a meaningful 
difference in satisfaction with DM. However, we recognize enrollment can be unpredictable. If we notice 
less than anticipated enrollment, we will start enrolling patients from the Lurie Children’s Hospital 
Cardiac Care Unit, a 36-bed ICU for pediatric patients admitted primarily for cardiac-related problems.  
We plan a subanalysis with the three groups defined by patient outcomes. From our family conference 
data we anticipate that of patients who meet our inclusion criteria, approximately 25% will die; 25% will 

18 
 
face one of our defined life-changing decisions; and 50% will have prolonged PICU stays. We will 
perform subanalyses on data from 63 parents/arm in groups 1 and 2 and 126 parents/arm in group 3. 
Effect sizes would be increased to 0.50 – 0.70 in these randomized group comparisons with smaller 
sample sizes. 
For parent interviews, we will collect data until reaching “data saturation,” the point at which successive 
information replicates previous data and no new information emerges.61 This will occur when no new 
codes emerge during analysis. Saturation will be determined for intervention and control groups 
separately. We do not anticipate completing more than 40 interviews from the intervention and 
education control arm each. 
 
6.2. Quantitative Analysis. 
 
This section describes the general statistical approach planned for addressing each of the 
aforementioned hypotheses. Prior to any database locks, the study statistician(s) will develop a formal 
statistical analysis plan (SAP). Any modifications to the statistical approaches will be documented via 
amendments to the SAP as opposed to amendments to the study protocol. The overall approach to 
statistical analysis will be generalized linear models accounting for clustering by family where both 
parents respond. This method can be used for both continuous variables using the identity link and 
categorical variables using the logit link.  All results will be considered significant with two-tailed tests 
and p-value <.05. For statistical analysis we will use SAS software version 9.4 (SAS Institute Inc., Cary, 
NC). 
 
Initial data analyses will consist of descriptive statistics (counts and percentages for categorical 
variables; mean, median, standard deviation for continuous variables) for all relevant variables to assess 
distributional properties, summarize baseline demographic and study data, and compare baseline data 
across study arms.  Distributional assumptions will be assessed prior to conduct of statistical test(s), and 
where appropriate, nonparametric methods or transformations of variables will be employed.  Analysis 
for parent outcomes (aim 2) will be done on an intention-to-treat (ITT) basis.  In cases of extreme 
amounts of missing data, multiple imputation methods will be used to conduct sensitivity analyses 
under different assumptions for missing data, as appropriate. All validated surveys will be scored per 
instrument instructions.  
 
6.2.a. Aim 1 Determine the feasibility, and perceived acceptability and effectiveness of PICU Supports 
 
To address hypothesis 1a. Implementation of PICU Support is feasible: 
We will record enrollment rate (number consented/ number approached for consent) and rate of return 
of study documents (see table 3). 
 
 
 
 
 

19 
 
Table 3. Assessing Return of Study Documents 
Parent Survey 1 (Initial) 
Number returned/number of parents enrolled 
Parent Survey 2 (Regularly scheduled feedback) 
Number returned/number of possible data 
collection times 
Parent Survey 3 (Post Family Meeting) 
Number returned/number of possible data 
collection times 
Parent Survey 4/4a  (discharge, 3-5 weeks post 
discharge, and 3-5 months post discharge) 
Number returned/number of patients enrolled (at 
each time point) 
Parent Survey 5/5a  (3-5 weeks post discharge, 
and 3-5 months post discharge) 
Number returned/number of patients enrolled (at 
each time point) 
Parent Interview* 
Number completed/number of Parents 
Approached 
HTM Study Survey 
Number returned/number of HTMs Approached 
& Number returned/number of patients enrolled 
* We do not anticipate interviewing all parents enrolled in the study.  
 
We will record the degree to which the core intervention components are implemented (see table 4 
below). 
 
Table 4. Assessing Fidelity to Intervention 
Activity 
Measurement 
Component of PICU Supports 
Initial visit with family 
Percent of patients enrolled 
Emotional Support 
Family provided with PICU 
Handbook 
Percent of patients enrolled 
Information Support 
Initial visit with PICU HTMs 
Percent of patients enrolled 
Communication Support 
Convene Family Meetings* 
Number of meetings/Number of 
meetings possible**  
Communication/Decision Support 
Pre-Family Meeting with 
family 
Percent of time per Family 
Meeting (mean/med/range) 
Communication/Decision/Emotional 
Support 
Pre- Family Meeting with 
HTMs 
Percent of time per Family 
Meeting (mean/med/range) 
Communication/Decision Support 
Post- Family Meeting with 
family 
Percent of time per Family 
Meeting (mean/med/range) 
Communication/Decision/Emotional 
Support 
Post- Family Meeting with 
HTM 
Percent of time per Family 
Meeting (mean/med/range) 
Communication/Decision Support 
Weekday check in with 
family* 
Percent of days possible/patient 
(mean/med/range) 
Communication/Decision/Emotional 
Support 
Weekday check in with 
HTM*** 
Percent of days possible/patient 
(mean/med/range) 
Communication/Decision Support 
Post-discharge follow-up 
Percent of patients enrolled 
Transition/Emotional Support 
* Will be considered as “occurred” if it is offered but the family or HTM does not need a family meeting 
or “check in.” 
** Minimum number of family meetings is one between three and seven days after admission then one 
time/week.  
*** Includes any member of the PICU healthcare team.  

20 
 
To address hypothesis 1b. Parents perceive PICU supports as acceptable and effective: 
We will present descriptive statistics of the results from the questions on Parent Surveys 4 and 5 
pertaining to the acceptability and effectiveness of PICU Supports. We will also use data obtained from 
the parent interviews (Approach to qualitative analysis described in section 6.3). 
To address hypothesis 1c. HTMs perceive PICU Supports as acceptable and effective: 
We will present descriptive statistics of the results from the questions on the Healthcare Team Member 
Study Survey pertaining to the acceptability and effectiveness of PICU Supports. We will also use data 
obtained from the HTM focus group/interview (Approach to qualitative analysis described in section 
6.3). 
6.2.b. Aim 2. Test the impact of PICU Supports during and after PICU discharge on parent outcomes 
(satisfaction with DM, decision regret, anxiety, depression, post-traumatic stress, and health-related 
quality of life). 
To address hypothesis 2a. PICU Supports improves parental satisfaction with DM: 
 
The primary outcome for the RCT is percentage of “excellent” scores in the DM domain of the pFS-ICU 
subscale between three and five weeks from discharge.  We will employ a generalized linear (mixed) 
model with identity link for percent “excellent” scores with fixed study arm and random family effects as 
independent variables.  Introduction of the random family effect will account for the within family 
correlation among responses for families with more than one response.  The model Wald test for the 
study arm variable will indicate statistical significance (or lack thereof) with respect to outcome when 
comparing intervention to control.  We will also explore inclusion of relevant baseline variables as fixed 
effects through a modified stepwise model building procedure (as will be explained in the SAP).  
Secondary analyses will utilize similar techniques to examine differences in long-term follow-up 
responses (i.e., between three and five months) across study arms.   
 
Secondary outcomes include total pFS-ICU 24 score, CSACD, and CAT.  The analyses for primary outcome 
will be repeated for each of these outcomes.  In addition, subgroup analysis will examine three groups 
defined by patient outcomes: patients that die in the PICU; patients that face one of the defined life-
changing decisions; and patients with prolonged PICU stays. We will evaluate demographic and 
biomedical categorical variables across these groups using chi-squared tests. An Analysis of Variance 
(ANOVA) will be used to compare continuous data for the three groups when data are normally 
distributed and the Kruskal-Wallis when data are not normally distributed. 
 
For data collected intermittently during the PICU admission, longitudinal analysis will be done using 
similar techniques to those mentioned above; however, a fixed time effect will be added to the model, 
and we will explore the inclusion of a random time effect.  Assessment of the group-by-time interaction 
term will allow identification of differential patterns over time in the two study arms with respect to 
outcome(s). Again, we will use analyses similar to those above to longitudinally compare scores on the 

21 
 
pFS-ICU 24 (total scores and score for the care and DM domains), CSACD, and CAT between the two 
study arms. 
 
Analyses above will be repeated as appropriate in order to examine the remaining hypotheses for Aim 2.  
Each relevant outcome will be explored in turn as appropriate for each hypothesis listed below: 
x 
Hypothesis 2b. PICU Supports decreases parental decision regret.  Outcome: DRS. 
x 
Hypothesis 2c. PICU Supports decreases short term parental anxiety, depression, symptoms of 
post-traumatic stress, health-related quality of life, and complicated bereavement.  Outcomes: 
Anxiety-Short Form 8a, Depression-Short Form 8a, IES-R (post-traumatic stress), Global Health 
scores, and ICG. 
x 
Hypothesis 2d. PICU Supports improves parental assessments of communication between HTMs 
and parents, and of team collaboration. Outcome: CAT and CSACD. 
 
Any additional exploratory or subgroup analyses for the primary and/or secondary outcomes will be 
detailed in the formal SAP. 
6.2.c. Aim 3. Test the impact of PICU Supports on parent and HTM assessments of communication and 
team collaboration. 
To address hypothesis 3: PICU Supports improves HTM assessments of team collaboration, we will 
present descriptive statistics (for each relevant study time point: before the pilot study and after the 
RCT) from the CSACD questions on the Healthcare Team Member Study Survey and also from the 
Healthcare Team Member Communication Survey. 
6.3. Qualitative Analysis. 
 
We will use directed content analysis to evaluate the qualitative data. Directed content analysis is used 
when existing theory or prior research about a phenomenon is incomplete or would benefit from 
elaboration.62 All audio data will be transcribed and personal identifiers removed. Study team members 
will define key variables and concepts as initial coding categories, then develop operational definitions 
and coding rules for each category. After initial data review, the categories and definitions will be 
revised and subcategories identified and defined through an iterative process. Any text not categorized 
with the initial coding scheme will be given new codes, allowing new ideas and concepts to emerge. The 
coding schema will be reviewed, refined and clarified as necessary. We will then recode the data with 
the revised codes. We will continue this iterative process until we do not identify new categories. 
Categories may be grouped as themes and compared.   
 
7.0. REGULATORY AND ETHICAL CONSIDERATIONS 
 
 
Study-related documentation will be completed as required by each study site’s IRB. Continuing review 
documentation will be submitted by the site investigator to the IRB as specified by the site IRB. If 
protocol changes are needed, we will submit a modification request to both participating study sites’ 
IRBs. Protocol changes will not be implemented prior to IRB approval unless necessary to eliminate 

22 
 
apparent immediate hazards to research subjects. In such a case, the IRBs will be promptly informed of 
the change following implementation. 
 
If we need to make any adjustments to our intervention or study design based on the pilot we will 
submit and obtain approvals for the appropriate amendments to the Lurie Children’s IRB before starting 
the randomized controlled trial (RCT). 
 
7.1. Risk assessment.  
The study procedures do not pose greater than minimal risk. The main risk to participants is having 
emotional reactions when discussing experiences that include challenging personal or professional 
situations. For some, particularly parents, this may impose a psychological burden. However, research 
on stress from interviews with patients about their illness and with parents about their critically ill child 
indicates that the risk is minimal and may provide a beneficial outlet for concerns and feelings.63,64  We 
will give all participants contact information for a social worker or chaplain to use as a resource if they 
feel they need additional support.  
 
There is some risk that study personnel may also have adverse emotional reactions to collaborating on 
research of this nature. Study personnel will also be able to speak with a study team social worker or 
chaplain if they need additional support.  
 
The final risk to participants is that of a breach of confidentiality. (See section 7.7 for plans to mitigate 
this risk.)  
 
7.1.a. Identification and Management of Adverse events.  
Because this research imposes no more than minimal risk and due to the nature of the research, adverse 
events are not anticipated.  However, study team members, including the navigator, will report any 
unanticipated problem or complaints to the site PI and/or to Dr. Michelson. Events determined by Dr. 
Michelson to be unanticipated problems involving risks to subjects or others (UPIRTSOs) will be 
simultaneously reported by the site principle investigator to the both the Lurie Children’s Hospital and 
Comer Children’s Hospital IRBs per policy and also to PCORI. Other adverse events (not UPIRTSOs as 
determined by Dr. Michelson) will be reported per IRB policy at the time of continuing review. Dr. 
Michelson will inform the Comer Children’s Hospital PI about any UPIRTSOs. Any protocol changes will 
be handled as described above (Section 7.0)   
 
7.1.b. Identification of parent morbidity. 
In the event that we receive a survey from a parent with an anxiety T score of ≥ 67.5 (severe depression-
unpublished date) or a depression T score of ≥ 75 (severe depression-unpublished data) or comments on 
the survey that suggest the parent needs additional support, a study team member will contact the case 
patient’s assigned SW and ask that they contact the parent via phone to follow-up. If it is clear from the 
information obtained from a particular parent that he/she does not have a working relationship with a 
SW, a study team member SW or chaplain will contact the parent via phone to follow-up.  This is 
indicated on the consent form. 

23 
 
 
7.2. Potential benefit of study participation. 
This study has the potential to benefit parent participants. Parents in the intervention group may feel 
better supported in their PICU experience as a result of the PICU Supports intervention, and parents in 
the control group may benefit from the educational brochure they are provided.  
 
There are no direct benefits to HTM study participants. It is possible that giving parents information 
about the PICU via the educational brochure (given to parents randomized to the control group) or the 
PICU Handbook (given to parents randomized to the intervention group) may improve conversations 
between families and HTMs, thus impacting (perhaps supporting) HTM’s interactions with parents. But it 
is also a possibility that such information could complicate communication and thus negatively impact 
conversation. Navigator involvement with the parent and HTMs could similarly be supportive (or not) to 
HTMs.  
 
This research aims to benefit future families of critically ill patients and their HTMs by providing 
necessary information about the impact of PICU Supports on the experience for parents and HTMs. 
Benefits could potentially have a long lasting positive impact on patients, families, and HTMs. The 
minimal risk imposed is greatly outweighed by the significant potential benefit to parents, patients, and 
HTMs. 
7.3. Request for waivers of consent. 
A waiver of consent will be requested from the study site IRBs for the screening data collection as it is 
required for identification of potential participants (preparatory research) and involves no more than 
minimal risk.  
 
For case patients 12 – 17 years old who are not capable of making decisions we request a waiver of 
written assent based on the following:  “The capability of some or all of the children is so limited that 
they cannot reasonably be consulted.” By definition all case patients will be admitted to the PICU and as 
such critically ill. The vast majority will not be in any condition to consider a research protocol and give 
assent. The parent consent form includes information about the data collected for case patients, and 
thus by signing the parent written consent, parents will be also giving permission for the data collection 
involved for their child. If in the judgment of the study team a case patient is capable of providing 
assent, a study team member will obtain oral assent (after obtaining consent from a parent) and 
document that in the chart.  
 
7.4 Health Insurance Portability and Accountability Act (HIPAA) 
A HIPAA waiver will be requested from both study sites for all data with personal health information 
(PHI) collected without obtaining consent.  
 
 
 
 

24 
 
7.5. Informed Consent Process. 
 
7.5.a. Case patients. The parent consent form includes information about the data collected for case 
patients, and thus by signing the parent written consent, parents will be also giving permission for the 
data collection involved for their child. If in the judgment of the study team a case patient is capable of 
providing assent, a study team member will obtain oral assent (after obtaining consent from a parent) 
and document that in the chart. 
 
7.5.b. Parents of case patients. After determining eligibility a study team member will approach parents 
and explain the details of the study at the patient’s bedside or a separate room based on the parent(s) 
preference. Parents invited to participate in the pilot study will be asked to sign the pilot study consent 
form and those invited to participate in the RCT will be asked to sign the RCT consent form. These two 
forms differ because parents in the pilot will receive the intervention while those in the RCT will receive 
either the intervention or the control. To minimize the possibility of undue influence, a study team 
member will also verbally explain to all potential participants that the study is voluntary and that their 
relationship with people at Lurie Children's Hospital or Comer Children’s Hospital and anyone on their 
healthcare team (if applicable) will not change if they choose not to participate. Potential participants 
will be asked to sign the consent form after they receive a copy of the consent and have had ample time 
to ask any questions they may have about the study to the research team In all cases the informed 
consent process will be done in a language understandable to the person giving and obtaining informed 
consent. A copy of all signed consent forms will be given to participants and maintained in the office of 
the principle investigator in a locked cabinet/file. 
 
7.5.c. Healthcare team members. The consent process for HTMs depends on the component of the 
study in which they are participating. 
1. The pre-post HTM assessment of team communication. The survey for this component of the 
study will be preceded by a sheet that contains the appropriate information needed to consider 
participation. There will be no formal consent form. Rather, completion of the survey will 
constitute consent.  
2. The verbal feedback/assessment of the intervention. All focus group/interview participants will 
be asked to sign a written consent form prior to participating in the focus group or interview. 
When contacting participants with information about the date, time, and location of the focus 
group or interview, a study team member will review the basic study procedures with them. 
Prior to starting the focus group or interview, a study team member will review the consent 
form. Potential participants will have an opportunity at that time to ask questions about the 
study and about the consent form. All participants will be asked to sign the consent form prior 
to the start of the focus group/interview. All participants will be given a copy of the consent 
form. A second copy of the consent form will be maintained in the office of the principle 
investigator. 
3. The written feedback/assessment of communication during family meetings.  The survey for this 
component of the study will be preceded by a sheet that contains the appropriate information 

25 
 
needed to consider participation. There will be no formal consent form. Rather, completion of 
the survey will constitute consent. 
4. The written feedback/assessment of the intervention. The survey for this component of the 
study will be preceded by a sheet that contains the appropriate information needed to consider 
participation. There will be no formal consent form. Rather, completion of the survey will 
constitute consent. 
 
7.6. Privacy. 
Obtaining consent from parent participants will occur in a room that accommodates the privacy needs 
of each potential participant.  
 
Obtaining consent from HTMs for participation in focus groups/interviews will occur in a room that 
accommodates the privacy needs of each potential participant. 
 
7.7. Confidentiality. 
 
All study participants will be given a study identification (ID). Any study materials will utilize the 
participant’s study ID. Each site will maintain a record that links participant’s study ID to their name and 
medical record number (for patients) in case it is necessary to review materials for accuracy. These 
records will be kept in a secure manner in accordance with IRB protocol. Signed consent forms will be 
maintained in a locked cabinet/drawer. Only study team members will have access to the consent forms 
and the codes linking the participants’ names and consent forms to the study ID. 
 
All materials made available to the lead site from Comer Children’s Hospital will utilize study IDs and/or 
be de-identified (as in the case of transcribed data from interviews or focus groups).  
 
The audio recordings from interviews and focus groups will be downloaded to a password-protected 
server at each site using study IDs to label the recordings. The audio recordings will be sent directly from 
each site to Voss Transcription, Inc. to be transcribed.  Study personnel at each site will review the 
transcripts against the audio recordings for accuracy and remove all personal identifiers. Cleaned 
transcripts will be loaded into the web-based password protected qualitative software “Dedoose” for 
analysis. All audio recordings will be destroyed in accordance with IRB regulations. 
 
All written surveys will be maintained at the study site of origin in a locked cabinet. Alternatively, a study 
site may scan written survey into an electronic file, store the electronic version on a password-protected 
server, and destroy the written survey. All data from written surveys will be entered into the secured 
REDCap data management software. The written version of all surveys will be maintained and then 
destroyed according to IRB protocol.  
 
All study information submitted for publication or available for public viewing will be reviewed by 
members of the study team to ensure that no identifying data is included. In some cases, study 
participants may be asked to review information submitted for publication or to be made available for 

26 
 
public viewing to ensure that no identifying data is included. Participants will have the option of 
receiving information about the results of the study. If they chose this option, they will supply 
information about where we should send these results (this is part of the consent form). Participants will 
only be sent results with de-identified data in the form of abstracts or manuscripts. 
 
 
7.8. Cost, Compensation, and Participant Reimbursement. 
 
7.8.a. Study Costs. 
All costs related to the study will be paid for from a fund provided to the study Principle Investigator by 
PCORI. 
 
7.8.b. Participant Reimbursement. 
Parent participants will receive $25 for their involvement in the study. This will be provided to them via 
a gift card mailed to their house after survey 4/4a or survey 5/5a are returned at the time point 
between three and five weeks after PICU discharge.  
 
HTM will not receive reimbursement for participation. Food and refreshments will be served at focus 
groups.  
 
8.0. ANTICIPATED STUDY TIMELINE 
 
We anticipate the project will proceed according to the following timeline: 
 
Pilot enrollment: 3 months 
 
Modifications of the intervention (if necessary): 1-2 months 
 
RCT enrollment at Lurie Children's Hospital: 18 months 
 
RCT enrollment at Comer Children’s Hospital: 14 months 
 
Data analysis and manuscript preparation: a minimum of 4 months 
 
 
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Oct 11 2004;164(18):1999-2004. 

 
 
 
 
 
 
Appendix 
 
 

 
 
 
Appendix 1. Patient Screening Tool 
 
 

 
 
Appendix 2. Enrollment Tool 
 
 

 
 
Appendix 3. Daily Family Data Form 
 
An abbreviated version of this form is being submitted. Here we present the data collected on day 1. 
The same data is collected on subsequent days.  
 

 
 
 
Appendix 4. Family Meeting Form 
 
 

 
 
Appendix 5: The Navigator Reflection Sheet 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Appendix 6: Patient Status Update 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Appendix 7. Parent Survey 1 
 
 

 
 
Appendix 8. Parent Survey 2 
 
 

 
 
Appendix 9. Parent Survey 3 
 
 

 
 
Appendix 10. Parent Survey 4B 
 
 

 
 
Appendix11. Parent Survey 5B 
 
 

 
 
Appendix 12. Parent Survey 4A 
 
 
 

 
 
Appendix 13. Parent Survey 5B 
 
 
 

 
 
Appendix 14. Parent Interview Guide 
 
 

 
 
Appendix 15. Thank you Letter to Parents 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Appendix 16. Cover letters for parent mailing/email after PICU discharge 
 
The following three letters follow: 
- 
The cover letter for nonbereaved parents to be used for the surveys mailed to parents 3-5 
weeks after PICU discharge and 3-5 months after PICU discharge 
- 
The cover letter for bereaved parents to be used for the surveys mailed to parents 3-5 weeks 
after PICU discharge. 
- 
The cover letter for bereaved parents to be used for the surveys mailed to parents 3-5 monts 
after PICU discharge. 
Appropriate modifications will be made to these letters for those participants enrolled at Comer 
Children’s Hospital. The final version of the modified letters for Comer Children’s Hospital will be 
submitted to the IRB prior to starting the RCT at Comer Children’s Hospital. 
 

 
 
Appendix 17. Cover letter for HTM email for communication survey 
 
The following will be included in an email to all potential participants eligible to complete the HTM 
Communication Survey 
 
 

 
 
Appendix 18. HTM Communication Survey 
 
 

 
 
Appendix 19. HTM Post Family Meeting Survey 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
Appendix 20. Cover letter for HTM email for study survey 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
Appendix 21. HTM Study Survey 
 
 

 
 
Appendix 22. HTM Focus Group Guide 
 
 

 
 
Appendix 23. Post HTM Focus Group Survey 
 
 

 
 
Appendix 24. PICU Handbook 
 
The PICU Handbook is being submitted as a separate document. 
 

 
 
Appendix 25. Patient/Family Diary 
 
 

 
 
 
Appendix 26. Frontline Provider Sheet 
 
 

 
 
Appendix 27. Communication Log 
 
 

 
 
Appendix 28. Family Conference Chart Note 
 
 

 
 
Appendix 29. End-of-life Checklist 
 
 

 
 
Appendix 30. Bereavement Packet 
The following materials will constitute the Bereavement Packet at Lurie Children's Hospital. These 
materials are currently being given to the parent of any child who dies at Lurie Children's Hospital. A 
modified version of these materials will be developed for use at Comer Children’s Hospital and will be 
submitted prior to starting the RCT at Comer Children’s Hospital. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Appendix 31. Educational Brochure 

All IRB Approved Documents for 2015-146 
Submitted for Continuing Review ϬϳͬϬϲͬϮϬϭϲ 

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,

 
 
 
 
 
Thank you for helping us know more about communication 
in the pediatric intensive care unit (PICU). This survey 
asks you for information about you. Please complete this 
survey and return it in the envelope provided. 
 
Parent Survey 1 
 
This survey takes approximately 15-20 minutes to complete 
 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 2 AB 
 
Version Date: 
Participant ID: 
 
Please mark an “X” in the box next to the answer that best describes you, and/or fill in 
the blank. 
1. What is your sex?      
    Female      
    Male   
 
2. What is your relationship to the child who has been admitted to pediatric intensive 
care unit? 
 Mother 
 Father 
 Other caregiver__________________________________________(describe) 
 
 
3. What is your Date of Birth?  
 
 
 
 
4. What racial category best describes you? (select all that apply) 
 American Indian / Alaska Native  
 Asian 
 Black / African American 
 Native Hawaiian  or Other Pacific Islander 
 White 
 Other ____________________________________________(describe) 
 
 
5. What ethnic group best describes you? 
 Hispanic or Latino 
 Not Hispanic or Latino 
 
6. Which category best describes the highest level of education you completed? 
 Elementary School 
 High School  
 College 
 Post-Graduate 
 Other education  ____________________________________(describe) 
 
 
 
 
 
 
Month XX 
Day XX 
Year XXXX 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 3 AB 
 
Version Date: 
Participant ID: 
 
7. 
What is your total household income? 
 
 $25,000 or less 
 
$25,000 - $49,000 
 
$50,000 - $74,999 
 
$75,000 - $99,000 
 
$100,000 or more 
 
8. 
What is your current marital status? 
 Single 
 Married 
 Living with a partner 
 Separated 
 Divorced 
 Widowed 
 
9. 
What is your religious affiliation? ___________________________________ 
 
10. Is religion an important part of your daily life? 
 Yes 
 No 
 
11. Do you consider yourself a spiritual person? 
 Yes 
 No 
 
12. How many siblings does your child have? _________________ 
 
13. How do you perceive the severity of your child’s illness?  
 Mild 
 Moderate 
 Severe 
 
14. How many times has your child been hospitalized before?  ____________________ 
 
15. Of those hospitalizations, how many times was   ____________________________ 
your child admitted to the PICU? 
 
 
 
 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 4 AB 
 
Version Date: 
Participant ID: 
 
 
16. Do you or your family have other Intensive Care Unit experiences? (select all that apply) 
 Yes – This child has been in the PICU before 
 Yes – I have another child that has been in the PICU before 
 Yes – I have  had another family member in an adult or pediatric ICU before 
 Yes – I have been a patient in an ICU before 
 No – I do not have previous Intensive Care Unit experience 
 
 
 
 
What is today’s date 
 
 
 
 
Month XX 
Day XX 
Year XXXX 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 5 AB 
 
Version Date: 
Participant ID: 
 
 
 
 © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
 
 
 
 
Please respond to each statement by marking an “X” in one box per row. 
 
Never 
Rarely Sometimes Usually Always 
1. I have someone to give me good 
advice about a crisis if I need it. 
  
  
  
  
  
2. I have someone to turn to for 
suggestions about how to deal with a 
problem. 
  
  
  
  
  
3. I have someone to give me information 
if I need it. 
  
  
  
  
  
4. I get useful advice about important 
things in life. 
  
  
  
  
  
5. I can get helpful advice from others 
when dealing with a problem. 
  
  
  
  
  
6. My friends have useful information to 
help me with my problems. 
  
  
  
  
  
7. I have people I can turn to for help with 
my problems. 
  
  
  
  
  
8. Other people help me get information 
when I have a problem. 
  
  
  
  
  

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 6 AB 
 
Version Date: 
Participant ID: 
 
For the following questions please think about how you felt BEFORE your child was 
admitted to the PICU.  
 
Please respond to each statement by marking an “X” in one box per row. 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt worthless. 
  
  
  
  
  
2. I felt helpless. 
  
  
  
  
  
3. I felt depressed. 
  
  
  
  
  
4. I felt hopeless. 
  
  
  
  
  
5. I felt like a failure. 
  
  
  
  
  
6. I felt unhappy. 
  
  
  
  
  
7. I felt that I had nothing to look 
forward to. 
  
  
  
  
  
8. I felt that nothing could cheer me 
up. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 7 AB 
 
Version Date: 
Participant ID: 
 
For the following questions please think about how you felt BEFORE your child was 
admitted to the PICU.  
 
Please respond to each statement by marking an “X” in one box per row. 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt fearful. 
  
  
  
  
  
2. I found it hard to focus on 
anything other than my 
anxiety. 
  
  
  
  
  
3. My worries overwhelmed me. 
  
  
  
  
  
4. I felt uneasy. 
  
  
  
  
  
5. I felt nervous. 
  
  
  
  
  
6. I felt like I needed help for my 
anxiety. 
  
  
  
  
  
7. I felt anxious. 
  
  
  
  
  
8. I felt tense. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 1 
 
Please continue on the next page  
 
Page 8 AB 
 
Version Date: 
Participant ID: 
 
For the following questions please think about how you felt BEFORE your child was 
admitted to the PICU.  
 
Please respond to each statement by marking an “X” in one box per row. 
 
  
Poor  
Fair 
Good 
Very 
Good 
Excellent 
1. In general, would you say your 
health is: 
  
  
  
  
  
2. In general, would you say your 
quality of life is: 
  
  
  
  
  
3. In general, how would you rate 
your physical health? 
  
  
  
  
  
4. In general, how would you rate 
your mental health, including 
your mood and your ability to 
think? 
  
  
  
  
  
5. In general, how would you rate 
you satisfaction with your 
social activities and 
relationships? 
  
  
  
  
  
6. In general, how would you rate 
how well you carry out your 
usual social activities and 
roles? (This includes activities 
at home, at work, and in your 
community, and 
responsibilities as a parent, 
child, spouse, employee, 
friend, etc.) 
  
  
  
  
  
 
Not at all  
A little  
Moderately Mostly 
Completely 
7. To what extent are you able to 
carry out your everyday 
physical activities such as 
walking, climbing stairs, 
carrying groceries, or moving 
a chair? 
  
  
  
  
  
 
 
 
 
 
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
8. How often have you been 
bothered by emotional 
problems such as feeling 
anxious, depressed, or 
irritable? 
  
  
  
  
  

 
 
Parent Survey 1 
 
Page 9 AB 
 
Version Date: 
Participant ID: 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. How would you rate 
your pain on average?                       
 
No 
Pain 
 
 
 
 
 
 
 
 
 
 
 Worst     
imaginable     
  pain 
 
 
 
 
 © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
None 
Mild 
Moderate 
Severe 
Very 
Severe 
9. How would you rate your 
fatigue on average?  
  
  
  
  
  
 
 
 
 
 
 

 
 
Parent Survey 1 
 
Page 10 AB 
 
Version Date: 
Participant ID: 
 
For each of the following items, please mark an “x” in the box below what best indicates 
how much you agree with the following statements as they apply to you over the 
month BEFORE your child was admitted to the PICU. If a particular situation has not 
occurred recently, answer according to how you think you would have felt. 
Not 
true at 
all 
Rarely 
true 
Sometimes 
true 
Often 
true 
True 
nearly 
all the 
time 
1. I am able to adapt when changes 
occur. 
  
  
  
 
  
2. I have at least one close and secure 
relationship that helps me when I am 
stressed. 
  
  
  
 
  
3. When there are no clear solutions to 
my problems, sometimes fate or God 
can help. 
  
  
  
 
  
4. I can deal with whatever comes my 
way. 
  
  
  
 
  
5. Past successes give me confidence in 
dealing with new challenges and 
difficulties. 
  
  
  
 
  
6. I try to see the humorous side of 
things when I am faced with problems. 
  
  
  
 
  
7. Having to cope with stress can make 
me stronger. 
  
  
  
 
  
8. I tend to bounce back after illness, 
injury, or other hardships. 
  
  
  
 
  
9. Good or bad, I believe that most things 
happen for a reason. 
  
  
  
 
  
10. I give my best effort no matter what 
the outcome may be. 
  
  
  
 
  

 
 
Parent Survey 1 
 
Page 11 AB 
 
Version Date: 
Participant ID: 
 
Not 
true at 
all 
Rarely 
true 
Sometimes 
true 
Often 
true 
True 
nearly 
all the 
time 
11. I believe I can achieve my goals, even 
if there are obstacles. 
  
  
  
 
  
12. Even when things look hopeless, I 
don’t give up. 
  
  
  
 
  
13. During times of stress/crisis, I know 
where to turn for help. 
  
  
  
 
  
14. Under pressure, I stay focused and 
think clearly. 
  
  
  
 
  
15. I prefer to take the lead in solving 
problems rather than letting others 
make all the decisions. 
  
  
  
 
  
16. I am not easily discouraged by failure. 
  
  
  
 
  
17. I think of myself as a strong person 
when dealing with life’s challenges 
and difficulties. 
  
  
  
 
  
18. I can make unpopular or difficult 
decisions that affect other people, if it 
is necessary. 
  
  
  
 
  
19. I am able to handle unpleasant or 
painful feelings like sadness, fear, and 
anger. 
  
  
  
 
  
20. In dealing with life’s problems, 
sometimes you have to act on a hunch 
without knowing why. 
  
  
  
 
  

 
 
Parent Survey 1 
 
Page 12 AB 
 
Version Date: 
Participant ID: 
 
 
Not 
true at 
all 
Rarely 
true 
Sometimes 
true 
Often 
true 
True 
nearly 
all the 
time 
21. I have a strong sense of purpose in 
life. 
  
  
  
 
  
22. I feel in control of my life. 
  
  
  
 
  
23. I like challenges. 
  
  
  
 
  
24. I work to attain my goals no matter 
what roadblocks I encounter along the 
way. 
  
  
  
 
  
25. I take pride in my achievements. 
  
  
  
 
  
 
Copyright © 2001, 2013 by Kathryn M. Connor, M.D., and Jonathan R.T. Davidson. M.D. 
 
 
 
 
 
 
Thank you very much for helping us know more about 
how to help the patients and families in the PICU.  
Please return this survey in the envelope provided. 
 

 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos 
Pediátricos (PICU). Esta encuesta aborda preguntas 
acerca de usted. Le pedimos que la conteste y la envíe en 
el sobre proporcionado. 
 
Encuesta 1 para el padre o la madre de 
familia  
 
La encuesta toma aproximadamente de 15 a 20 minutos en contestarse 

Page 2AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Marque con una X la casilla de la respuesta que mejor le describa o llene el espacio en 
blanco. 
1. ¿Cuál es su sexo?      
    Femenino     
    Masculino   
 
 
2. ¿Cuál es su relación con el niño que fue admitido en la Unidad de Cuidados 
Intensivos Pediátricos (PICU)? 
 madre 
 padre 
 otra ____________________________________________(descríbala) 
 
 
 
3. ¿Cuál es su fecha de nacimiento?  
 
 
 
 
4. 
¿Qué categoría racial lo describe mejor?  (Marque todas las que correspondan) 
 india nativa americana / nativa de Alaska  
 asiática 
 negra / afroamericana 
 nativo de Hawái o de otra isla del Pacífico. 
 blanca 
 otra ____________________________________________(descríbala) 
 
 
5. 
¿Qué grupo étnico lo describe mejor?   
 hispano o latino 
 no hispano o latino 
 
 
6.  ¿Qué categoría describe mejor el máximo nivel de escolaridad que usted alcanzó? 
 primaria 
 escuela preparatoria o High School  
 título universitario 
 posgrado 
 otro tipo de educación _______________________________ (descríbala) 
 
 
 
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

Page 3AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
7. ¿Cuál es el ingreso total de su hogar? 
 
 $25,000 o menos 
 
$25,000 - $49,000 
 
$50,000 - $74,999 
 
$75,000 - $99,000 
 
$100,000 or más 
 
8. 
¿Cuál es su estado civil actual? 
 
soltero(a) 
 
casado(a) 
 
vivo con mi pareja 
 
separado(a) 
 
divorciado(a) 
 
viudo(a) 
 
9. ¿Cuál es su afiliación religiosa? ___________________________________ 
 
10. 
¿La religión es una parte importante de su vida diaria? 
 
sí 
 
no 
 
11. 
¿Se considera una persona espiritual? 
 
sí 
 
no 
 
12. ¿Cuántos hermanos tiene su hijo? _________________ 
 
13. ¿Cómo percibe la gravedad de la enfermedad de su hijo?  
 leve 
 moderada 
 grave 
 
14. ¿Cuántas veces ha estado su hijo hospitalizado en el pasado?  _________________ 
 
15. De dichas hospitalizaciones, ¿cuántas veces internaron a su hijo en PICU? _______ 
 
 
 
 
 
 

Page 4AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
16. ¿Usted o su familia han tenido otras experiencias en la Unidad de Cuidados 
Intensivos? (Marque todas las que correspondan) 
 Si – Este hijo ha estado antes en PICU 
 Si – Tengo otros hijo que ha estado internado antes en PICU 
 Si – otro familiar ha estado internado en una unidad de cuidados intensivos para adultos. 
 Si – yo he sido paciente en una unidad de cuidados intensivos 
 No – no tengo experiencias previas en una unidad de cuidados intensivos 
 
 
17. Fecha del día de hoy: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

Page 5AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
 © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
 
 
 
 
 
 
 
 
Responda a cada afirmación  marcando sólo una respuesta ("x") por fila. 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Tengo quien me dé buenos consejos 
sobre una situación crítica si los 
necesito 
  
 
  
  
  
2. Tengo a quién recurrir para que me 
sugiera cómo lidiar con un problema. 
  
 
  
  
  
3. Tengo quien me dé información si la 
necesito 
  
 
  
  
  
4. Recibo consejos útiles sobre cosas 
importantes de la vida 
  
 
  
  
  
5. Puedo recibir consejos útiles de otras 
personas cuando tengo un problema 
  
 
  
  
  
6. Mis amigos/as tienen información útil 
para ayudarme con mis problemas 
  
 
  
  
  
7. Tengo personas a quienes puedo 
acudir para que me ayuden con mis 
problemas 
  
 
  
  
  
8. Otras personas me ayudan a obtener 
información cuando tengo un 
problema 
  
 
  
  
  

Page 6AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Para contestar las siguientes preguntas, piense en cómo se sentía ANTES de que 
internaran a su hijo en PICU.  
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Senti que no valia nada 
  
  
  
  
  
2. Me senti indefenso/a (que no 
podia hacer nada para 
ayudarme) 
  
  
  
  
  
3. Me sentí deprimido/a 
  
  
  
  
  
4. Me sentí desesperanzado/a 
  
  
  
  
  
5. Me sentí fracasado/a 
  
  
  
  
  
6. Me sentí descontento/a 
  
  
  
  
  
7. Sentí que nada me ilusionaba 
  
  
  
  
  
8. Sentí que nada me podía 
animar 
  
  
  
  
  
 
 
 
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 
 
 
 
 
 
 
 
 

Page 7AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
Para contestar las siguientes preguntas, piense en cómo se sentía ANTES de que 
internaran a su hijo en PICU.  
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Sentí miedo 
  
 
  
  
  
2. Tuve dificultad para 
concentrarme en otra cosa que 
no fuera mi ansiedad 
  
 
  
  
  
3. Mis inquietudes fueron 
demasiado para mi 
  
 
  
  
  
4. Me sentí intranquilo/a 
  
 
  
  
  
5. Me sentí nervioso/a 
  
 
  
  
  
6. Sentí que necesitaba ayuda para 
controlar mi ansiedad. 
  
 
  
  
  
7. Sentí ansiedad 
  
 
  
  
  
8. Me sentí tenso/a 
  
 
  
  
  
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 

Page 8AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Para contestar las siguientes preguntas, piense en cómo se sentía ANTES de que internaran a su 
hijo en PICU.  
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
  
Mala  
Pasable 
Buena 
Muy 
buena 
Excelente 
1. En general, diría que su salud es 
 
  
  
  
  
2. En general, diría que su calidad de vida 
es 
 
  
  
  
  
3. En general, ¿cómo calificaría su salud 
física? 
 
  
  
  
  
4. En general, ¿cómo calificaría su salud 
mental, incluidos su estado de ánimo y 
su capacidad para pensar? 
 
  
  
  
  
5. En general, ¿cómo calificaría su 
satisfacción con sus actividades 
sociales y sus relaciones con otras 
personas? 
 
  
  
  
  
6. En general, califique en qué medida 
puede realizar sus actividades sociales 
y funciones habituales. (Esto 
comprende las actividades en casa, en 
el trabajo y en el área donde reside, así 
como sus responsabilidades como 
padre o madre, hijo/a, cónyuge, 
empleado/a, amigo/a, etc.) 
 
 
  
  
  
  
 
Para 
nada 
Un poco 
Moderada
-mente 
En su 
mayoría 
Completame-
nte 
 
7. ¿En qué medida puede realizar sus 
actividades físicas diarias, como 
caminar, subir escaleras, cargar las 
compras o mover una silla? 
 
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Page 9AB 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
 
 
 
 
 © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
8. ¿Con qué frecuencia le han afectado 
problemas emocionales como sentir 
ansiedad, depresión o irritabilidad ? 
 
  
  
  
  
 
Ninguno 
Leve 
Moderado 
Intenso 
Muy 
intenso 
9. En promedio, ¿cómo calificaría su 
cansancio? 
  
  
  
  
  
 
 
 
 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. En promedio, ¿cómo 
calificaría su dolor ? 
                      
 
Ning
ún 
dolor  
 
 
 
 
 
 
 
 
 
 
El peor 
dolor 
imaginable  
 

Page 10AB 
Version Date: 
Participant ID: 
 
En el caso de cada una de las siguientes afirmaciones, marque con una “x” la casilla 
que mejor indique qué tanto está de acuerdo, según le correspondan a usted. Piense 
en el transcurso del mes ANTERIOR a la hospitalización de su hijo en PICU. Si 
una situación en particular no ha ocurrido recientemente, responda de acuerdo a lo que 
usted piensa que hubiera sentido.  
 
 
En 
absoluto 
Rara 
vez 
A veces 
A 
menudo 
Casi 
siempre 
1. Soy capaz de adaptarme cuando 
ocurren cambios. 
  
  
  
  
  
2. Tengo al menos una relación intima y 
segura que me ayuda cuando estoy 
estresado. 
  
  
  
  
  
3. Cuando no hay soluciones claras a 
mis problemas, a veces la suerte o 
Dios pueden ayudarme. 
  
  
  
  
  
4. Puedo enfrentarme a cualquier cosa. 
  
  
  
  
  
5. Los éxitos del pasado me dan 
confianza para enfrentarme con 
nuevos desafíos y dificultades. 
  
  
  
  
  
6. Cuando me enfrento con problemas 
intento ver el lado divertido de las 
cosas. 
  
  
  
  
  
7. Enfrentarme a las dificultades puede 
hacerme más fuerte. 
  
  
  
  
  
8. Tengo tendencia a recuperarme pronto 
tras enfermedades, heridas u otras 
privaciones. 
  
  
  
  
  
9. Buenas o malas, creo que la mayoría 
de las cosas ocurren por alguna razón. 
  
  
  
  
  
10. Siempre me esfuerzo sin importar cual 
pueda ser el resultado. 
  
  
  
  
  
Continúe en la siguiente página 

Page 11AB 
Version Date: 
Participant ID: 
 
 
 
 
 
 
En 
absoluto 
Rara 
vez 
A veces 
A 
menudo 
Casi 
siempre 
11. Creo que puedo lograr mis objetivos, 
incluso si hay obstáculos. 
  
  
  
  
  
12. No me doy por vencido a pesar de que 
las cosas parezcan no tener solución. 
  
  
  
  
  
13. Durante los momentos de 
estrés/crisis, sé dónde puedo buscar 
ayuda. 
  
  
  
  
  
14. Bajo presión, me centro y pienso 
claramente. 
  
  
  
  
  
15. Prefiero intentar solucionar las cosas 
por mi mismo, a dejar que otros tomen 
todas las decisiones. 
  
  
  
  
  
16. No me desanimo fácilmente ante el 
fracaso.  
 
  
  
  
  
  
17. Creo que soy una persona fuerte 
cuando me enfrento a los desafíos y 
dificultades de la vida. 
  
  
  
  
  
18. Si es necesario, puedo tomar 
decisiones no populares o difíciles 
que afectan a otras persona. 
  
  
  
  
  
19. Soy capaz de manejar sentimientos 
desagradables y dolorosos como 
tristeza, temor y enfado. 
  
  
  
  
  
20. Al enfrentarse a los problemas de la 
vida a veces hay que actuar 
intuitivamente, aún sin saber por qué. 
  
  
  
  
  
 
Continúe en la siguiente página 

Page 12AB 
Version Date: 
Participant ID: 
 
 
 
 
 
En 
absoluto 
Rara 
vez 
A veces 
A 
menudo 
Casi 
siempre 
21. Tengo muy claro lo que quiero en la 
vida.  
 
  
 
  
  
  
22. Siento que controlo mi vida. 
  
 
  
  
  
23. Me gustan los desafíos. 
  
 
  
  
  
24. Trabajo para conseguir mis objetivos 
sin importarme las dificultades que 
encuentro en el camino. 
  
 
  
  
  
25. Estoy orgulloso de mis logros. 
  
 
  
  
  
 
Copyright © 2001, 2013 by Kathryn M. Connor, M.D., and Jonathan R.T. Davidson. M.D. 
 
 
 
Gracias por permitirnos aprender más acerca de 
cómo podemos ayudar a los pacientes y sus familias 
en PICU.  
Envíe esta encuesta en el sobre proporcionado. 
 

 
 
 
 
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos 
Pediátricos (PICU). Esta encuesta le pide calificar varios 
aspectos de la atención que su hijo ha recibido, así como 
su participación en dicha atención. Le pedimos que 
conteste esta encuesta y la envíe en el sobre 
proporcionado.  
 
 
Encuesta 2 para el padre o la madre de familia  
 
La encuesta toma aproximadamente de 15 a 20 minutos en contestarse 
Fecha de hoy:  
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

Parent Survey 2 
Page 2AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
Satisfacción del padre de familia respecto a la atención en la Unidad de Cuidados Intensivos 
Pediátricos (Parent Satisfaction with Care in the Intensive Care Unit ©) 
pFS-ICU (24) 
 
¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
Las siguientes preguntas para USTED abordan aspectos de la admisión actual de su hijo en la 
unidad de cuidados intensivos. Sabemos que ha habido muchos doctores, enfermeros y otro 
personal que ha participado en el cuidado de su hijo. Entendemos que puede haber excepciones, 
pero nos interesa su opinión en general acerca de la calidad de la atención que le estamos 
proporcionando. Estamos conscientes de que probablemente usted y su familia están atravesando 
por un momento muy difícil. Agradecemos que se tome el tiempo de darnos su opinión. Le pedimos 
que se tome un momento para decirnos lo que estamos haciendo bien y lo que podemos mejorar en 
nuestra ICU. Tenga por seguro que todas las respuestas son confidenciales. Los médicos y 
enfermeros que cuidan de su hijo no podrán identificar sus respuestas.  
PARTE I: SATISFACCIÓN CON LA ATENCIÓN  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión. Si la pregunta no 
corresponde a la estancia de su hijo, entonces marque “no corresponde” (N/A). 
Cómo tratamos a su niño (el/la paciente): 
1. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que se 
le dio a su niño [el/la paciente]) 
 
Manejo de síntomas (qué tan bien evaluó y trató el personal de la ICU los síntomas de su niño): 
2.  Dolor 
3. Dificultad al respirar 
 
4. Inquietud 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 3AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
¿Cómo lo estamos haciendo? 
Sus opiniones respecto del ingreso de su niño a la Unidad de Cuidados Intensivos (ICU) 
¿Cómo lo tratamos a usted? 
 
5. Tomar en cuenta sus necesidades (qué tan bien mostró interés el personal de la ICU en las 
necesidades de usted): 
 
 
6. Apoyo emocional (qué tan bien le proporcionó apoyo emocional el personal de la ICU): 
 
 
7. Coordinación del cuidado (el trabajo de equipo de todo el personal de la ICU que cuidó a su niño): 
 
 
8. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que le 
fueron proporcionados a usted): 
 
ENFERMERAS 
 
9. Destreza y capacidad de las enfermeras de la ICU (qué tan bien cuidan las enfermeras a su niño): 
 
 
10. Frecuencia de comunicación con las enfermeras de la ICU (qué tan frecuentemente se 
comunicaron con usted las enfermeras de la ICU en relación con la condición de su niño): 
 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 4AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
¿Cómo lo estamos haciendo? 
Sus opiniones respecto del ingreso de su niño a la Unidad de Cuidados Intensivos (ICU) 
 
MÉDICOS (todos los médicos, incluyendo residentes e internos) 
11. Destreza y capacidad de los médicos de la ICU (qué tan bien cuidaron los médicos a su niño): 
 
LA ICU 
12. ¿Cómo fue el ambiente de la ICU? 
 
LA SALA DE ESPERA 
 
13. ¿Cómo fue el ambiente en la sala de espera de la ICU? 
 
14. A algunas personas les gusta que se haga todo en relación con sus problemas de salud, 
mientras que a otras no les gusta que se haga mucho.  ¿Qué tan satisfecho estuvo usted con el 
nivel o cantidad de cuidados de la salud que recibió su niño en la ICU? 
 
 muy insatisfecho    
 un poco insatisfecho    
 generalmente satisfecho 
 muy satisfecho    
 completamente satisfecho 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 5AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
PARTE 2: SATISFACCIÓN DEL PADRE O MADRE DE FAMILIA, PERSONA A CARGO DEL PACIENTE O 
TUTOR CON LA TOMA DE DECISIONES RESPECTO A LA ATENCIÓN QUE RECIBEN LOS PACIENTES 
EN ESTADO CRÍTICO 
Esta parte del cuestionario está diseñada para medir cómo se siente sobre SU participación en las decisiones 
relacionadas con la atención médica de su hijo. En la Unidad de Cuidados Intensivos (ICU), su hijo fue 
atendido por diferentes personas. Queremos que al contestar estas preguntas piense en toda la atención que 
ha recibido su hijo.  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión.   
NECESIDADES DE INFORMACIÓN 
 
1. Frecuencia de la comunicación con los médicos de la ICU (qué tan frecuentemente se 
comunicaron con usted los médicos de la ICU en relación con la condición de su niño): 
 
2. Facilidad para obtener información (buena disposición del personal de la ICU para responder a sus 
preguntas): 
 
 
3. Comprensión de la información (qué tan bien le proporcionó el personal de la ICU explicaciones que 
usted comprendió): 
 
4. Honestidad de la información (la honestidad de la información que le fue proporcionada a 
usted respecto de la condición de su niño): 
5. Totalidad/Integridad de la información (qué tan bien le informo a usted el personal de la ICU sobre 
lo que estaba sucediendo con su niño y la razón por la que se estaban haciendo las cosas): 
 
6. Consistencia de la información (la consistencia de la información que le fue proporcionada a usted 
respecto a la condición de su niño – obtuvo usted información similar por parte del médico, enfermera, 
etc.): 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 6AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
 
 ¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
PROCESO DE TOMA DE DECISIONES 
 
Durante la estancia de su niño en la ICU, se toman muchas decisiones importantes respecto del cuidado de la 
salud que él o ella recibe.  En las siguientes preguntas, elija una respuesta del siguiente grupo de ideas que 
mejor se ajuste a sus puntos de vista:  
 
7. ¿Se sintió usted incluido en el proceso de toma de decisiones? 
 Me sentí muy excluido 
 Me sentí un poco excluido 
 No me sentí ni incluido ni excluido en el proceso de toma de decisiones 
 Me sentí un poco incluido 
 Me sentí muy incluido 
 
8. ¿Se sintió usted apoyado durante el proceso de toma de decisiones? 
  Me sentí totalmente agobiado 
 Me sentí un poco agobiado 
 No me sentí ni agobiado ni apoyado 
 Me sentí apoyado 
 Me sentí muy apoyado  
 
9. ¿Sintió usted que tenía control sobre el cuidado de su niño? 
 Realmente sentí que no tenía control y que el sistema de cuidados de la salud asumió el control 
y ordenó el cuidado que mi niño recibió 
 Sentí un poco que no tenía control y que el sistema de cuidados de la salud asumió el control y 
ordenó el cuidado que mi niño recibió 
 No sentí que no tuviera control ni que tuviera control 
 Sentí que tenía algo de control sobre el cuidado que mi niño recibió 
 Sentí que tenía buen control sobre el cuidado que mi niño recibió 
 
10. Al tomar decisiones, ¿tuvo usted el tiempo suficiente para tratar sus inquietudes y que le 
respondieran sus preguntas? 
 Podría haber utilizado más tiempo 
 Tuve el tiempo suficiente 

Parent Survey 2 
Page 7AB 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
Las siguientes preguntas están relacionadas a las decisiones tomadas respecto a su hijo. Encierre 
en un círculo el número que mejor represente su opinión respecto al proceso del equipo. 
 
11. Los miembros del equipo planearon en conjunto tomar las decisiones respecto a la atención de 
su hijo. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
12. Los miembros del equipo tuvieron una comunicación abierta entre ellos al tomar las decisiones 
para su hijo. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
13. La responsabilidad de la toma de decisiones para su hijo se compartió entre los miembros del 
equipo.  
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
14. Los miembros del equipo colaboraron juntos en la toma de decisiones. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
             
15. En el proceso de la toma de decisiones, se tomaron en cuenta las inquietudes de todos los 
miembros del equipo respecto a las necesidades de hijo. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
16. La toma de decisiones para su hijo se coordinó entre los miembros del equipo.  
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
Completamente  
 
 
 
 
 
 
 
 
 
 
Completamente 
en desacuerdo  
 
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
 
17. ¿Qué tanto colaboraron los miembros del equipo en la toma de decisiones para su hijo? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7 
No colaboraron                                                         
      
 
 
 
      
 
Colaboraron  
 
  
 
 
 
 
 
 
 
 
 
 
 
completamente              
 
 
 
 
 
 
  
18. ¿Qué tan satisfecho está usted con la forma en que se tomaron las decisiones para su hijo? 
Esto se refiere al proceso de toma de decisiones, no necesariamente a las decisiones mismas. 
 
  1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7 
   Nada satisfecho 
 
                                                                
     
 
          
Muy satisfecho 
 
19. ¿Qué tan satisfecho estuvo usted con las decisiones que se tomaron para su hijo? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7 
 Nada satisfecho 
                                                               
  
 
          
 
Muy satisfecho 
 
 
©J. Baggs, 1992 

Parent Survey 2 
Page 8 
 
Version Date:  
 
 
 
  
 
     Participant ID:  
 
 
20. ¿Qué otras sugerencias tiene respecto a cómo mejorar la atención proporcionada en la 
ICU? 
 
 
 
 
 
 
 
 
 
 
 
21. Le pedimos que comparta algún comentario respecto a lo que hicimos bien. 
 
 
 
 
 
 
 
 
 
 
 
 
22. Añada algún comentario o sugerencias que usted crea podrían ser útiles para el personal 
de este hospital. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Gracias por permitirnos aprender más acerca de cómo 
podemos ayudar a los pacientes y sus familias en PICU.  
Envíe esta encuesta en el sobre proporcionado. 

 
 
 
 
 
 
 
 
Thank you for helping us to know more about 
communication in the pediatric intensive care unit (PICU). 
This survey asks you to rate various aspects of the care 
your child has received and your involvement in that care. 
Please complete this survey and return it  
in the envelope provided. 
 
Parent Survey 2  
This survey takes approximately15-20 minutes to complete 
 
 
Today’s date is:  
 
 
 
 
Month XX 
Day XX 
Year XXXX 

Parent Survey 2 
Page 2 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
Parent Satisfaction with Care in the Intensive Care Unit © 
pFS-ICU (24) 
 
How are we doing? 
Your opinions about your child’s ICU stay 
 
The questions that follow ask YOU about your child’s current ICU admission. We understand that 
there have been many doctors and nurses and other staff involved in caring for your child. We know 
that there may be exceptions, but we are interested in your overall assessment of the quality of 
care we are delivering. We understand that this is probably a very difficult time for you and your 
family. We would appreciate you taking the time to provide us with your opinions. Please take a 
moment to tell us what we are doing well and what we can do to make our ICU better. Please be 
assured that all responses are confidential. The doctors and nurses who are looking after your child 
will not be able to identify your response. 
PART I : SATISFACTION WITH CARE  
Please mark an “X” in the ONE box that best describes your feelings. If the question does not apply to 
your child’s stay then please mark “not applicable” (N/A). 
How did we treat your child (the patient): 
1. Concern and caring by the ICU staff (the courtesy, respect, and compassion your child [the patient] 
was given) 
Symptoms management (how well the ICU staff assessed and treated your child’s symptoms): 
2. Pain 
 
3. Breathlessness 
 
4. Agitation 
 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 3 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
How are we doing? 
Your opinions about your child’s ICU stay 
 
How did we treat you? 
5. Consideration of your needs (how well the ICU staff showed an interest in your needs): 
 
6. Emotional support (how well the ICU staff provided emotional support): 
 
7. Coordination of care (the teamwork of all the ICU staff who took care of your child): 
 
8. Concern and caring by ICU staff (the courtesy, respect, and compassion you were given): 
 
Nurses 
9. Skill and competence of ICU nurses (how well the nurses cared for your child): 
 
10. Frequency of communication with ICU nurses (how often nurses communicated to you about your 
child’s condition): 
 
 
 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 4 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
How are we doing? 
Your opinions about your child’s ICU stay 
 
Physicians (all doctors, including residents and fellows) 
11. Skill and competence of ICU doctors (how well doctors cared for your child): 
 
The ICU 
12. Atmosphere of ICU was? 
 
The Waiting Room 
13. The atmosphere in the ICU waiting room was? 
 
14. Some people want everything done for their health problems while others do not want a lot 
done. How satisfied are you with the level or amount of health care your child received in the 
ICU.  
 
 Very dissatisfied 
 Slightly dissatisfied 
 Mostly satisfied 
 Very satisfied 
 Completely satisfied 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 5 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
 
PART 2: PARENT, CAREGIVER, OR GUARDIAN SATISFACTION WITH 
DECISION-MAKING AROUND CARE OF CRITICALLY ILL PATIENTS 
 
This part of the questionnaire is designed to measure how you feel about YOUR involvement in 
decisions related to your child's health care.  In the Intensive Care Unit (ICU), your child may receive 
care from different people.  We would like you to think about all the care your child has received when 
you are answering the questions. 
 
Please mark an “X” in the ONE box that best describes your feelings.  
 
INFORMATION NEEDS 
 
1. Frequency of communication with ICU doctors (how often doctors communicated to you about your 
child’s condition): 
 
2. Ease of getting information (willingness of ICU staff to answer your questions): 
 
3. Understanding of information (how well ICU staff provided you with explanations that you 
understood): 
 
4. Honesty of information (the honesty of information provided to you about your child’s condition): 
 
5. Completeness of information (how well ICU staff informed you what was happening to your child and 
why things were being done): 
 
6. Consistency of information (the consistency of information provided to you about your child’s 
condition – did you get a similar story from the doctor, nurse, etc.): 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 2 
Page 6 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 How are we doing? 
Your opinions about your child’s ICU stay 
 
PROCESS OF MAKING DECISIONS 
 
During your child’s stay in the ICU, many important decisions are made regarding the health care she 
or he receives. From the following questions, pick one answer from each of the following set of ideas 
that best matches your views: 
 
7. Did you feel included in the decision making process? 
 I felt very excluded 
 I felt somewhat excluded 
 I felt neither included nor excluded from the decision making process 
 I felt somewhat included 
 I felt very included 
 
8. Did you feel supported during the decision making process? 
 I felt totally unsupported 
 I felt slightly unsupported 
 I felt neither supported nor unsupported 
 I felt supported 
 I felt very supported 
 
9. Did you feel you had control over the care of your child? 
 I felt really out of control and that the health care system took over and dictated the care my 
child received 
 I felt somewhat out of control and that the health care system took over and dictated the care 
my child received 
 I felt neither in control nor out of control 
 I felt I had some control over the care my child received 
 I felt that I had good control over the care my child received 
 
10. When making decisions, did you have adequate time to have your concerns addressed and 
questions answered? 
 I could have used more time 
 I had adequate time 
 
 
 
 
 
 

Parent Survey 2 
Page 7 AB 
Please continue on the next page 
Version Date:  
Participant ID: 
 
The following questions are related to decision making for your child. Please circle the number that 
best represents your judgment about the team process. 
 
 
11. Team members planned together to make decisions about care for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
 
 
 
 
 
 
     
12. Open communication between team members took place as decisions were made for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
13. Decision-making responsibilities for your child were shared among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
14. Team members cooperated in making decisions. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
15. In making decisions, all team members’ concerns about your child’s need were considered. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
16. Decision-making for your child was coordinated among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
17. How much collaboration among team members occurred in making decisions for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 No   
                                                         
      
 
 
 
 
 
Complete 
 
 Collaboration  
                                                                      
 
 
 
Collaboration 
 
  
18. How satisfied are you with the way decisions were made for your child? That is with the 
decision-making process, not necessarily with the decision itself. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
    
 Not Satisfied 
 
                                                                
     
 
         Very Satisfied 
 
19. How satisfied were you with decisions made for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied 
                                                               
 
  
 
         Very Satisfied 
 
 
 
©J. Baggs, 1992 

Parent Survey 2 
Page 8 AB 
 
Version Date:  
 
 
 
  
 
     Participant ID:  
 
 
20. What other suggestions do you have on how to make care provided in the ICU better? 
 
 
 
 
 
 
 
 
 
 
 
 
 
21. Please share any comments on what we did well? 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
22. Please add any comments or suggestions that you feel may be helpful to the staff of this 
hospital. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Thank you very much for helping us know more about how 
to help the patients and families in the PICU.  
Please return this survey in the envelope provided. 

 
 
 
 
 
 
 
 
 
 
 
 
Thank you for helping us to learn more about communication in 
the pediatric intensive care unit (PICU). This survey asks 
questions about the meeting you had with members of your 
healthcare team.  Please complete this survey and return it  
in the envelope provided. 
 
Parent Survey 3  
This survey takes approximately 10-15 minutes to complete 
 
 
 
Today’s date is:  
 
 
 
 
Month XX 
Day XX 
Year XXXX 

 
 
 
Parent Survey 3 
Page 2 AB 
 
Version Date:  
Participant ID: 
 
Communication is a very important part of quality medical care.  We would like to know 
how you feel about the way your child's healthcare team communicated with you.  Your 
answers are completely confidential, so please be as open and honest as you can. 
Thank you very much. 
Please respond to each statement by marking and “X” in one box per row. 
My child’s healthcare team… 
 
Poor 
Fair 
Good 
Very 
Good 
Excellent 
1. Greeted me in a way that made me feel 
comfortable. 
 
  
  
  
  
2. Treated me with respect. 
 
  
  
  
  
3. Showed interest in my ideas about my 
child's health. 
 
  
  
  
  
4. Understood my main health concerns for 
my child. 
 
  
  
  
  
5. Paid attention to me (looked at me, listened 
carefully). 
 
  
  
  
  
6. Let me talk without interruptions. 
 
  
  
  
  
7. Gave me as much information as I wanted. 
 
  
  
  
  
8. Talked in terms I could understand. 
 
  
  
  
  
9. Check to be sure I understood everything 
 
  
  
  
  
10. Encouraged me to ask questions. 
 
  
  
  
  
11. Involved me in decisions as much as I 
wanted. 
 
  
  
  
  
12. Discussed next steps, including any follow 
up plans. 
 
  
  
  
  
13. Showed care and concern. 
 
  
  
  
  
14. Spend the right amount of time with me. 
 
  
  
  
  
 

 
 
 
Parent Survey 3 
Page 3 AB 
 
Version Date:  
Participant ID: 
 
15. Were any decisions about your child’s care discussed during the meeting?  
 
 Yes 
If “yes,” what decisions were discussed? 
_____________________________________________________ 
_____________________________________________________ 
 No  
 Don’t know  
 
 
16. How well did this meeting help you understand the decisions that may need to be made for 
your child? (Please circle one number.) 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Not at all well  
 
 
 
 
 
 
 
Extremely well 
 
 
17. Overall, how well did the team communicate with you during the meeting? (Please circle one 
number.) 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Not at all well  
 
 
 
 
 
 
 
Extremely well 
 
 
18. Overall, how well did this meeting meet your needs? (Please circle one number.) 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Not at all well  
 
 
 
 
 
 
 
Extremely well 
 
 
 
19. Please describe why the meeting did or did not meet your needs. (Please use the back of 
the page if you need more space.) 
 
 
 
Thank you very much for helping us know more about 
how to help the patients and families in the PICU.  
Please return this survey in the envelope provided. 

 
 
 
 
 
 
 
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos Pediátricos 
(PICU). Esta encuesta aborda preguntas acerca de la reunión 
que tuvo con los miembros del equipo médico. Le pedimos que la 
conteste y la envíe en el sobre proporcionado. 
 
Encuesta 3 para el padre o la madre de 
familia  
La encuesta toma aproximadamente de 10 a 15 minutos en contestarse 
 
Fecha de hoy:  
 
 
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

 
 
 
Parent Survey 3 
Page 2AB 
 
Version Date:  
Participant ID: 
 
La comunicación es un elemento muy importante para la calidad de la atención médica.  
Nos gustaría saber cómo se siente respecto a la comunicación que mantuvo con usted 
el equipo médico. Sus respuestas son completamente confidenciales, así que le 
pedimos que sea tan honesto como pueda. Muchas gracias. 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
La atención médica de mi hijo… 
 
mala 
regular 
buena 
muy 
buena 
excelente  
1. Me saludaron de una manera que me hizo 
sentir bien. 
 
  
  
  
  
2. Me trataron con respeto. 
 
  
  
  
  
3. Mostraron interés en mis ideas respecto a 
la salud de mi hijo. 
 
  
  
  
  
4. Comprendieron mis inquietudes principales 
respecto a la salud de mi hijo. 
 
  
  
  
  
5. Me pusieron atención (me miraron a los 
ojos y escucharon atentamente). 
 
  
  
  
  
6. Me dejaron hablar sin interrupciones. 
 
  
  
  
  
7. Me dieron toda la información que solicité.  
 
  
  
  
  
8. Hablaron en términos que pude entender. 
 
  
  
  
  
9. Se cercioraron de que había entendido 
todo. 
 
  
  
  
  
10. Me animaron a hacer preguntas. 
 
  
  
  
  
11. Me incluyeron en la toma de decisiones 
siempre que lo desee. 
 
  
  
  
  
12. Hablamos sobre los siguientes pasos, 
incluyendo los planes de seguimiento. 
 
  
  
  
  
13. Mostraron cuidado e interés. 
 
  
  
  
  
14. Pasaron la cantidad adecuada de tiempo 
conmigo. 
 
  
  
  
  
 

 
 
 
Parent Survey 3 
Page 3 
 
Version Date:  
Participant ID: 
 
15. ¿Se discutió alguna decisión sobre el cuidado de su hijo durante la reunión?  
 
 Sí 
Si así fue, ¿cuáles decisiones se discutieron? 
_____________________________________________________ 
_____________________________________________________ 
 No  
 No sé    
 
 
16. ¿Qué tan útil fue dicha reunión para ayudarle a comprender las decisiones que pudieran 
necesitarse tomar para su hijo? (Encierre una opción). 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Nada bien 
 
 
 
 
 
 
 
 
Extremadamente bien 
 
 
17. En general, ¿qué tan bien se comunicó el equipo con usted durante la reunión? (Encierre 
una opción). 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Nada bien 
 
 
 
 
 
 
 
 
Extremadamente bien 
 
 
18. En general, ¿qué tan bien cumplió sus expectativas esta reunión? (Encierre una opción). 
 
 
1 
 
     2 
 
          3 
               4 
 
       5 
Nada bien 
 
 
 
 
 
 
 
 
Extremadamente bien 
 
 
 
19. Describa por qué la reunión cumplió o no con sus necesidades. (Si necesita más espacio, 
utilice el reverso de la página). 
 
 
Gracias por permitirnos aprender más acerca de 
cómo podemos ayudar a los pacientes y sus familias 
en PICU.  
Envíe esta encuesta en el sobre proporcionado. 

 
 
 
 
 
 
 
Thank you for helping us know more about communication in the 
pediatric intensive care unit (PICU). This survey asks you for 
information about your experience in the PICU, your reactions to 
the brochure you received, and about yourself.  Please complete 
this survey and return it in the envelope provided. 
 
Parent Survey 4 
This survey takes approximately 30-45 minutes to complete 
 
 
Today’s date is:  
 
 
 
 
Month XX 
Day XX 
Year XXXX 

Parent Survey 4 
        Page 2 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
Please select the answer that best reflects your experience. 
 
 
Useless 
Not Very 
Useful 
Very 
Useful 
Extremely  
Useful 
 
Did Not 
Use 
1. How useful to you was the brochure 
that you received at the beginning of 
your stay in the PICU? 
  
  
  
  
  
 
 
 
2. Please comment on any parts of the brochure that you found useful. 
 
 
 
 
 
3. Please comment on any parts of the brochure that you did not like. 
 
 
 
 
 
 
4. How might we improve the brochure? 
 
 
 
 
 

Parent Survey 4 
      Page 3 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
 
5. Please tell us any other questions/comments you have about the brochure or being in the PICU? 
 
 

Parent Survey 4 
      Page 4 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
Parent Satisfaction with Care in the Intensive Care Unit © 
pFS-ICU (24) 
 
How are we doing? 
Your opinions about your child’s ICU stay 
 
The questions that follow ask YOU about your child’s current ICU admission. We understand that 
there have been many doctors and nurses and other staff involved in caring for your child. We know 
that there may be exceptions, but we are interested in your overall assessment of the quality of 
care we are delivering. We understand that this is probably a very difficult time for you and your 
family. We would appreciate you taking the time to provide us with your opinions. Please take a 
moment to tell us what we are doing well and what we can do to make our ICU better. Please be 
assured that all responses are confidential. The doctors and nurses who are looking after your child 
will not be able to identify your response. 
PART I : SATISFACTION WITH CARE  
Please mark an “X” in the ONE box that best describes your feelings. If the question does not apply to 
your child’s stay then please mark “not applicable” (N/A). 
How did we treat your child (the patient)? 
1. Concern and caring by the ICU staff (the courtesy, respect, and compassion your child [the patient] 
was given) 
 
Symptoms management (how well the ICU staff assessed and treated your child’s symptoms): 
2. Pain 
 
3. Breathlessness 
 
4. Agitation 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
      Page 5 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
How did we treat you? 
5. Consideration of your needs (how well the ICU staff showed an interest in your needs): 
 
6. Emotional support (how well the ICU staff provided emotional support): 
 
7. Coordination of care (the teamwork of all the ICU staff who took care of your child): 
 
8. Concern and caring by ICU staff (the courtesy, respect, and compassion you were given): 
 
Nurses 
9. Skill and competence of ICU nurses (how well the nurses cared for your child): 
 
10. Frequency of communication with ICU nurses (how often nurses communicated to you about your 
child’s condition): 
 
Physicians (all doctors, including residents and fellows) 
11. Skill and competence of ICU doctors (how well doctors cared for your child): 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
      Page 6 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
The ICU 
12. Atmosphere of ICU was? 
 
The Waiting Room 
13. The atmosphere in the ICU waiting room was? 
 
14. Some people want everything done for their health problems while others do not want a lot 
done. How satisfied are you with the level or amount of health care your child received in the 
ICU.  
 
 Very dissatisfied 
 Slightly dissatisfied 
 Mostly satisfied 
 Very satisfied 
 Completely satisfied 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
      Page 7 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
PART 2: PARENT, CAREGIVER, OR GUARDIAN SATISFACTION WITH 
DECISION-MAKING AROUND CARE OF CRITICALLY ILL PATIENTS 
 
This part of the questionnaire is designed to measure how you feel about YOUR involvement in 
decisions related to your child's health care.  In the Intensive Care Unit (ICU), your child may receive 
care from different people.  We would like you to think about all the care your child has received when 
you are answering the questions. 
Please mark an “X” in the ONE box that best describes your feelings.  
 
INFORMATION NEEDS 
 
15. Frequency of communication with ICU doctors (how often doctors communicated to you about your 
child’s condition): 
 
16. Ease of getting information (willingness of ICU staff to answer your questions): 
 
17. Understanding of information (how well ICU staff provided you with explanations that you 
understood): 
 
18. Honesty of information (the honesty of information provided to you about your child’s condition): 
 
19. Completeness of information (how well ICU staff informed you what was happening to your child and 
why things were being done): 
 
20. Consistency of information (the consistency of information provided to you about your child’s 
condition – did you get a similar story from the doctor, nurse, etc.): 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
      Page 8 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
 How are we doing? 
Your opinions about your child’s ICU stay 
 
PROCESS OF MAKING DECISIONS 
 
During your child’s stay in the ICU, many important decisions are made regarding the health care she 
or he receives. From the following questions, pick one answer from each of the following set of ideas 
that best matches your views: 
 
21. Did you feel included in the decision making process? 
 I felt very excluded 
 I felt somewhat excluded 
 I felt neither included nor excluded from the decision making process 
 I felt somewhat included 
 I felt very included 
 
22. Did you feel supported during the decision making process? 
 I felt totally unsupported 
 I felt slightly unsupported 
 I felt neither supported nor unsupported 
 I felt supported 
 I felt very supported 
 
23. Did you feel you had control over the care of your child? 
 I felt really out of control and that the health care system took over and dictated the care my 
child received 
 I felt somewhat out of control and that the health care system took over and dictated the care 
my child received 
 I felt neither in control nor out of control 
 I felt I had some control over the care my child received 
 I felt that I had good control over the care my child received 
 
24. When making decisions, did you have adequate time to have your concerns addressed and 
questions answered? 
 I could have used more time 
 I had adequate time 
 
 
 
 

Parent Survey 4 
      Page 9 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
The following questions are related to team collaboration during decision making for your child. 
Please circle the number that best represents your judgment about the team process. 
 
 
1. Team members planned together to make decisions about care for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
 
 
 
 
 
 
     
2. Open communication between team members took place as decisions were made for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
3. Decision-making responsibilities for your child were shared among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
4. Team members cooperated in making decisions. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
5.  In making decisions, all team members’ concerns about your child’s need were considered. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
6. Decision-making for your child was coordinated among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
7. How much collaboration among team members occurred in making decisions for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 No   
                                                         
      
 
 
 
 
 
Complete 
 
 Collaboration  
                                                                      
 
 
 
Collaboration 
 
 
8. How satisfied are you with the way decisions were made for your child? That is with the 
decision-making process, not necessarily with the decision itself. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
    
 Not Satisfied 
 
                                                                
     
 
         Very Satisfied 
 
9. How satisfied were you with decisions made for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied 
                                                               
 
  
 
         Very Satisfied 
 
 
 
©J. Baggs, 1992 
 
 

 
 
Parent Survey 4 
 
Page 10 A 
Please continue on the next page  
Version Date:  
Participant ID: 
 
The following questions are about decision making in the PICU. 
 
1. Please write down the MOST important decision made for your child while he/she was in 
the PICU. 
 
 
 
For the following questions, please think about the decision you have identified above.   
Then, please mark an “X” in the ONE box per row that best describes your feelings now 
about this decision. 
 
Strongly 
Agree 
Agree 
Neither 
Agree 
Nor 
Disagree 
Disagree 
Strongly 
Disagree 
2. It was the right decision. 
  
  
  
  
  
3. I regret the choice that was 
made. 
  
  
  
  
  
4. I would go for the same choice 
if I had to do it over again. 
  
  
  
  
  
5. The choice did my child a lot 
of harm. 
  
  
  
  
  
6. The decision was a wise one. 
  
  
  
  
  
 
 
 
 

 
 
Parent Survey 4 
 
Page 11 A 
Please continue on the next page  
Version Date:  
Participant ID: 
 
Please respond to each statement by marking an “X” in one box per row. 
 
In the past 7 days… 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt worthless. 
  
  
  
  
  
2. I felt helpless. 
  
  
  
  
  
3. I felt depressed. 
  
  
  
  
  
4. I felt hopeless. 
  
  
  
  
  
5. I felt like a failure. 
  
  
  
  
  
6. I felt unhappy. 
  
  
  
  
  
7. I felt that I had nothing to look 
forward to. 
  
  
  
  
  
8. I felt that nothing could cheer me 
up. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
 
 
 

 
 
Parent Survey 4 
 
Page 12 A 
Please continue on the next page  
Version Date:  
Participant ID: 
 
Please respond to each statement by marking an “X” in one box per row. 
 
In the past 7 days… 
 
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt fearful. 
  
  
  
  
  
2. I found it hard to focus on 
anything other than my 
anxiety. 
  
  
  
  
  
3. My worries overwhelmed me. 
  
  
  
  
  
4. I felt uneasy. 
  
  
  
  
  
5. I felt nervous. 
  
  
  
  
  
6. I felt like I needed help for my 
anxiety. 
  
  
  
  
  
7. I felt anxious. 
  
  
  
  
  
8. I felt tense. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
 

 
 
Parent Survey 4 
 
Page 13 A 
Please continue on the next page  
Version Date:  
Participant ID: 
 
 
 
 
Please respond to each statement by marking an “X” in one box per row. 
 
 
  
Poor  
Fair 
Good 
Very 
Good 
Excellent 
1. In general, would you say your 
health is: 
  
  
  
  
  
2. In general, would you say your 
quality of life is: 
  
  
  
  
  
3. In general, how would you rate 
your physical health? 
  
  
  
  
  
4. In general, how would you rate 
your mental health, including your 
mood and your ability to think? 
  
  
  
  
  
5. In general, how would you rate 
you satisfaction with your social 
activities and relationships? 
  
  
  
  
  
6. In general, how would you rate 
how well you carry out your usual 
social activities and roles? (This 
includes activities at home, at 
work, and in your community, and 
responsibilities as a parent, child, 
spouse, employee, friend, etc.) 
  
  
  
  
  
 
 
 
 
 
 
 
Not at all  
A little  
Moderately Mostly 
Completely 
7. To what extent are you able to 
carry out your everyday physical 
activities such as walking, 
climbing stairs, carrying groceries, 
or moving a chair? 
  
  
  
  
  
 
 
 
 
 
 
 
Never 
 
Rarely 
 
Sometimes 
 
Often 
 
Always 
 
8. How often have you been bothered 
by emotional problems such as 
feeling anxious, depressed, or 
irritable? 
  
  
  
  
  

 
 
Parent Survey 4 
 
Page 14 A 
Please continue on the next page  
Version Date:  
Participant ID: 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. How would you rate your 
pain on average? 
                      
 
No 
Pain 
 
 
 
 
 
 
 
 
 
 
 Worst     
imaginable     
  pain 
 
 
 
 
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
None 
Mild 
Moderate 
Severe 
Very 
Severe 
9. How would you rate your 
fatigue on average?  
  
  
  
  
  
 
 
 
 
 
 

Parent Survey 4 
        Page 15 A 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
 
Below is a list of difficulties people sometimes have after stressful life events.  Please read each item 
and then indicate how distressing each difficulty has been for you during the past 7 days with 
respect to your child being in the PICU.  
How much were you distressed or bothered by these difficulties? 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
1. Any reminder brought back 
feelings about it. 
  
  
  
  
  
2. I had trouble staying asleep. 
  
  
  
  
  
3. Other things kept making me 
think about it. 
  
  
  
  
  
4. I felt irritable and angry. 
  
  
  
  
  
5. I avoided letting myself get 
upset when I thought about it 
or was reminded of it. 
  
  
  
  
  
6. I thought about it when I didn't 
mean to. 
  
  
  
  
  
7. I felt as if it hadn't happened or 
wasn't real. 
  
  
  
  
  
8. I stayed away from reminders 
of it. 
  
  
  
  
  
9. Pictures about it popped into 
my head. 
  
  
  
  
  
10. I was jumpy and easily 
startled. 
  
  
  
  
  
11. I tried not to think about it. 
  
  
  
  
  
12. I was aware that I still had a lot 
of feelings about it, but I didn't 
deal with them. 
  
  
  
  
  
13. My feelings about it were kind 
of numb. 
  
  
  
  
  
14. I found myself acting or feeling 
like I was back at that time. 
  
  
  
  
  

 
 
Parent Survey 4 
 
 
Page 16 A 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
15. I had trouble falling asleep. 
  
  
  
  
  
16. I had waves of strong feelings 
about it.  
  
  
  
  
  
17. I tried to remove it from my 
memory. 
  
  
  
  
  
18. I had trouble concentrating. 
  
  
  
  
  
19. Reminders of it caused me to 
have physical reactions, such 
as sweating, trouble breathing, 
nausea, or a pounding heart. 
  
  
  
  
  
20. I had dreams about it. 
  
  
  
  
  
21. I felt watchful and on-guard. 
  
  
  
  
  
22. I tried not to talk about it. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
Thank you very much for helping us know more about how to 
help the patients and families in the PICU.  
Please return this survey in the envelope provided. 
 

 
  
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos Pediátricos 
(PICU). Esta encuesta aborda preguntas sobre su experiencia en 
PICU, su opinión respecto al folleto que recibió y preguntas acerca 
de usted. Le pedimos que la conteste y la envíe en el sobre 
proporcionado. 
Encuesta 4 para el padre o la madre de familia  
La encuesta toma aproximadamente de 30 a 45 minutos en contestarse 
 
Fecha de hoy:  
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

Parent Survey 4 
Page 2 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
Elija la respuesta que mejor describa su experiencia.  
 
 
Inútil 
No muy 
útil 
Muy útil 
Bastante 
útil 
 
No lo usé 
1. ¿Qué tan útil fue para usted el 
folleto que recibió al inicio de su 
estancia en PICU? 
  
  
  
  
  
 
 
 
 
2. Denos su opinión respecto a las partes del folleto que le parecieron útiles.  
 
 
 
 
 
 
 
 
3. Denos su opinión acerca de las partes del folleto que no le gustaron. 
 
 
 
 
 
 
4. ¿Cómo podemos mejorar el folleto? 
 
 
 
 
 
 

Parent Survey 4 
Page 3 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
 
 
5. Anote cualquier otra pregunta o comentario que tenga respecto al folleto o a su estancia en 
PICU: 

Parent Survey 4 
Page 4 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
Satisfacción del padre de familia respecto a la atención en la Unidad de Cuidados Intensivos 
Pediátricos (Parent Satisfaction with Care in the Intensive Care Unit ©) 
pFS-ICU (24) 
 
¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
Las siguientes preguntas para USTED abordan aspectos de la admisión actual de su hijo en la 
unidad de cuidados intensivos. Sabemos que ha habido muchos doctores, enfermeros y otro 
personal que ha participado en el cuidado de su hijo. Entendemos que puede haber excepciones, 
pero nos interesa su opinión en general acerca de la calidad de la atención que le estamos 
proporcionando. Estamos conscientes de que probablemente usted y su familia están atravesando 
por un momento muy difícil. Agradecemos que se tome el tiempo de darnos su opinión. Le pedimos 
que se tome un momento para decirnos lo que estamos haciendo bien y lo que podemos mejorar en 
nuestra ICU. Tenga por seguro que todas las respuestas son confidenciales. Los médicos y 
enfermeros que cuidan de su hijo no podrán identificar sus respuestas.  
PARTE I: SATISFACCIÓN CON LA ATENCIÓN  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión. Si la pregunta no 
corresponde a la estancia de su hijo, entonces marque “no corresponde” (N/A). 
Cómo tratamos a su niño (el/la paciente): 
1. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que se 
le dio a su niño [el/la paciente]) 
 
Manejo de síntomas (qué tan bien evaluó y trató el personal de la ICU los síntomas de su niño): 
2.  Dolor 
3. Dificultad al respirar 
 
4. Inquietud 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 5 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
¿Cómo lo tratamos a usted? 
 
5. Tomar en cuenta sus necesidades (qué tan bien mostró interés el personal de la ICU en las 
necesidades de usted): 
 
 
6. Apoyo emocional (qué tan bien le proporcionó apoyo emocional el personal de la ICU): 
 
 
7. Coordinación del cuidado (el trabajo de equipo de todo el personal de la ICU que cuidó a su niño): 
 
 
8. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que le 
fueron proporcionados a usted): 
 
ENFERMERAS 
 
9. Destreza y capacidad de las enfermeras de la ICU (qué tan bien cuidan las enfermeras a su niño): 
 
 
10. Frecuencia de comunicación con las enfermeras de la ICU (qué tan frecuentemente se 
comunicaron con usted las enfermeras de la ICU en relación con la condición de su niño): 
 
 
MÉDICOS (todos los médicos, incluyendo residentes e internos) 
11. Destreza y capacidad de los médicos de la ICU (qué tan bien cuidaron los médicos a su niño): 
 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 6 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
LA ICU 
12. ¿Cómo fue el ambiente de la ICU? 
 
LA SALA DE ESPERA 
 
13. ¿Cómo fue el ambiente en la sala de espera de la ICU? 
 
14. A algunas personas les gusta que se haga todo en relación con sus problemas de salud, 
mientras que a otras no les gusta que se haga mucho.  ¿Qué tan satisfecho estuvo usted con el 
nivel o cantidad de cuidados de la salud que recibió su niño en la ICU? 
 
 muy insatisfecho    
 un poco insatisfecho    
 generalmente satisfecho 
 muy satisfecho    
 completamente satisfecho 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 7 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
PARTE 2: SATISFACCIÓN DEL PADRE O MADRE DE FAMILIA, PERSONA A CARGO DEL PACIENTE O 
TUTOR CON LA TOMA DE DECISIONES RESPECTO A LA ATENCIÓN QUE RECIBEN LOS PACIENTES 
EN ESTADO CRÍTICO 
Esta parte del cuestionario está diseñada para medir cómo se siente sobre SU participación en las decisiones 
relacionadas con la atención médica de su hijo. En la Unidad de Cuidados Intensivos (ICU), su hijo fue 
atendido por diferentes personas. Queremos que al contestar estas preguntas piense en toda la atención que 
ha recibido su hijo.  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión.   
NECESIDADES DE INFORMACIÓN 
 
15. Frecuencia de la comunicación con los médicos de la ICU (qué tan frecuentemente se 
comunicaron con usted los médicos de la ICU en relación con la condición de su niño): 
 
16. Facilidad para obtener información (buena disposición del personal de la ICU para responder a sus 
preguntas): 
 
 
17. Comprensión de la información (qué tan bien le proporcionó el personal de la ICU explicaciones que 
usted comprendió): 
 
18. Honestidad de la información (la honestidad de la información que le fue proporcionada a usted 
respecto de la condición de su niño): 
19. Totalidad/Integridad de la información (qué tan bien le informo a usted el personal de la ICU sobre 
lo que estaba sucediendo con su niño y la razón por la que se estaban haciendo las cosas): 
 
20. Consistencia de la información (la consistencia de la información que le fue proporcionada a usted 
respecto a la condición de su niño – obtuvo usted información similar por parte del médico, enfermera, 
etc.): 
 
 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
   
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 8 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 ¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
PROCESO DE TOMA DE DECISIONES 
 
Durante la estancia de su niño en la ICU, se toman muchas decisiones importantes respecto del cuidado de la 
salud que él o ella recibe.  En las siguientes preguntas, elija una respuesta del siguiente grupo de ideas que 
mejor se ajuste a sus puntos de vista:  
21. ¿Se sintió usted incluido en el proceso de toma de decisiones? 
 Me sentí muy excluido 
 Me sentí un poco excluido 
 No me sentí ni incluido ni excluido en el proceso de toma de decisiones 
 Me sentí un poco incluido 
 Me sentí muy incluido 
 
22. ¿Se sintió usted apoyado durante el proceso de toma de decisiones? 
  Me sentí totalmente agobiado 
 Me sentí un poco agobiado 
 No me sentí ni agobiado ni apoyado 
 Me sentí apoyado 
 Me sentí muy apoyado  
 
23. ¿Sintió usted que tenía control sobre el cuidado de su niño? 
 Realmente sentí que no tenía control y que el sistema de cuidados de la salud asumió el control 
y ordenó el cuidado que mi niño recibió 
 Sentí un poco que no tenía control y que el sistema de cuidados de la salud asumió el control y 
ordenó el cuidado que mi niño recibió 
 No sentí que no tuviera control ni que tuviera control 
 Sentí que tenía algo de control sobre el cuidado que mi niño recibió 
 Sentí que tenía buen control sobre el cuidado que mi niño recibió 
 
24. Al tomar decisiones, ¿tuvo usted el tiempo suficiente para tratar sus inquietudes y que le 
respondieran sus preguntas? 
 Podría haber utilizado más tiempo 
 Tuve el tiempo suficiente 
 
 
 
 

Parent Survey 4 
Page 9 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
Las siguientes preguntas están relacionadas a las decisiones tomadas respecto a su hijo. Encierre 
en un círculo el número que mejor represente su opinión respecto al proceso del equipo. 
 
1. Los miembros del equipo planearon en conjunto tomar las decisiones respecto a la atención de 
su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
2. Los miembros del equipo tuvieron una comunicación abierta entre ellos al tomar las decisiones 
para su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
3. La responsabilidad de la toma de decisiones para su hijo se compartió entre los miembros del 
equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
4. Los miembros del equipo colaboraron juntos en la toma de decisiones. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
 
 
 
 
 
 
 
 
                                                               
5. En el proceso de la toma de decisiones, se tomaron en cuenta las inquietudes de todos los 
miembros del equipo respecto a las necesidades de hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
6. La toma de decisiones para su hijo se coordinó entre los miembros del equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
7. ¿Qué tanto colaboraron los miembros del equipo en la toma de decisiones para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
       
  7 
 
No colaboraron                                                           
 
 
 
     
 
 Colaboraron  
 
 
 
 
 
 
 
 
 
 
 
 
 
completamente 
 
8.  ¿Qué tan satisfecho está usted con la forma en que se tomaron las decisiones para su hijo? 
Esto se refiere al proceso de toma de decisiones, no necesariamente a las decisiones mismas. 
 
 
  1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7  
 
 Nada satisfecho 
                                                      
 
     
 
         
 Muy satisfecho 
 
9. ¿Qué tan satisfecho estuvo usted con las decisiones que se tomaron para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7 
 
Nada satisfecho      
 
 
 
 
 
 
 
 
 
Muy satisfecho               
 
 
 
 
 
 
  
          
©J. Baggs, 1992 

Parent Survey 4 
Page 10 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
                                                               
  
 
 
Las siguientes preguntas tratan acerca de la toma de decisiones en PICU. 
 
1. Describa la decisión MÁS IMPORTANTE que tomó para su hijo mientras se encontraba 
en PICU: 
 
 
 
Para contestar las siguientes preguntas, piense en la decisión que acaba de anotar.   
Después, marque con una “X”, sólo UNA casilla por fila que mejor describa sus 
sentimientos actuales respecto a esta decisión. 
 
Completa- 
mente de 
acuerdo 
 
De 
acuerdo 
 
Ni de 
acuerdo ni 
en 
desacuerdo 
 
En 
desacuerdo 
 
Completa-
mente en 
desacuerdo 
 
2. Fue la decisión correcta 
  
  
  
  
  
3. Me arrepiento de la 
decisión que se tomó 
  
  
  
  
  
4. Si tuviera que volver a 
hacerlo, tomaría la misma 
decisión 
  
  
  
  
  
5. La decisión lastimó 
mucho a mi hijo(a) 
  
  
  
  
  
6. La decisión fue muy sabia 
  
  
  
  
  
 
 

Parent Survey 4 
Page 11 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
En los últimos 7 días... 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Senti que no valia nada 
  
  
  
  
  
2. Me senti indefenso/a (que no 
podia hacer nada para 
ayudarme) 
  
  
  
  
  
3. Me sentí deprimido/a 
  
  
  
  
  
4. Me sentí desesperanzado/a 
  
  
  
  
  
5. Me sentí fracasado/a 
  
  
  
  
  
6. Me sentí descontento/a 
  
  
  
  
  
7. Sentí que nada me ilusionaba 
  
  
  
  
  
8. Sentí que nada me podía 
animar 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 

Parent Survey 4 
Page 12 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
 
 En los últimos 7 días...  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
1. Sentí miedo 
  
  
  
  
  
2. Tuve dificultad para concentrarme 
en otra cosa que no fuera mi 
ansiedad 
  
  
  
  
  
3. Mis inquietudes fueron demasiado 
para mi 
  
  
  
  
  
4. Me sentí intranquilo/a 
  
  
  
  
  
5. Me sentí nervioso/a 
  
  
  
  
  
6. Sentí que necesitaba ayuda para 
controlar mi ansiedad. 
  
  
  
  
  
7. Sentí ansiedad 
  
  
  
  
  
8. Me sentí tenso/a 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 
 

Parent Survey 4 
Page 13 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
  
Mala  
Pasable 
Buena 
Muy 
buena 
Excelente 
1. En general, diría que su salud es 
 
  
  
  
  
2. En general, diría que su calidad de vida 
es 
 
  
  
  
  
3. En general, ¿cómo calificaría su salud 
física? 
 
  
  
  
  
4. En general, ¿cómo calificaría su salud 
mental, incluidos su estado de ánimo y 
su capacidad para pensar? 
 
  
  
  
  
5. En general, ¿cómo calificaría su 
satisfacción con sus actividades 
sociales y sus relaciones con otras 
personas? 
 
  
  
  
  
6. En general, califique en qué medida 
puede realizar sus actividades sociales 
y funciones habituales. (Esto 
comprende las actividades en casa, en 
el trabajo y en el área donde reside, así 
como sus responsabilidades como 
padre o madre, hijo/a, cónyuge, 
empleado/a, amigo/a, etc.) 
 
 
  
  
  
  
 
Para 
nada 
Un poco 
Moderada
-mente 
En su 
mayoría 
Completame-
nte 
 
7. ¿En qué medida puede realizar sus 
actividades físicas diarias, como 
caminar, subir escaleras, cargar las 
compras o mover una silla? 
 
  
  
  
  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
8. ¿Con qué frecuencia le han afectado 
problemas emocionales como sentir 
ansiedad, depresión o irritabilidad ? 
 
  
  
  
  

Parent Survey 4 
Page 14 A 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
 
 
 
 
Ninguno 
Leve 
Moderado 
Intenso 
Muy 
intenso 
9. En promedio, ¿cómo calificaría su 
cansancio? 
  
  
  
  
  
 
 
 
 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. En promedio, ¿cómo 
calificaría su dolor ? 
                      
 
Ning
ún 
dolor  
 
 
 
 
 
 
 
 
 
 
El peor 
dolor 
imaginable  
 

 
  
A continuación se encuentra una lista dificultades que en ocasiones presentan algunas personas 
después de un suceso estresante en su vida. Lea cada declaración y después indique que tan 
estresante ha sido para usted cada dificultad presentada durante los últimos 7 días, con respecto a 
la hospitalización de su hijo en PICU.  
¿Qué tanto le estresaron o molestaron estas dificultades? 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
1. Todo lo que le trajo recuerdos 
y le hizo revivir sus 
sentimientos. 
  
  
  
  
  
2. Tuve dificultades para 
mantenerme dormido. 
 
  
  
  
  
  
3. Otras cosas me lo recordaban 
constantemente. 
  
  
  
  
  
4. Me sentí irritable y enojado. 
  
  
  
  
  
5. Evitaba molestarme cuando 
pensaba en ello o algo me lo 
recordaba. 
  
  
  
  
  
6. Pensaba en ello sin quererlo. 
  
  
  
  
  
7. Sentí como si no hubiera 
pasado o no hubiera sido real. 
  
  
  
  
  
8. Me alejé de lo que me hacía 
recordarlo. 
  
  
  
  
  
9. Imágenes sobre ello me venían 
a la cabeza. 
  
  
  
  
  
10. Estaba nervioso y me 
sorprendía fácilmente. 
  
  
  
  
  
11. Trataba de no pensar en ello. 
  
  
  
  
  
12. Estaba consciente de que 
todavía tenía muchos 
sentimientos, pero no hice 
nada al respecto. 
  
  
  
  
  
13. Estaba insensible a ello. 
  
  
  
  
  
14. Me encontré actuando y 
sintiendo que estaba de 
regreso en ese momento. 
  
  
  
  
  
 
 
 
 
 
 
 

Parent Survey 4 
 
Page 16 A 
 
Version Date:  
Participant ID: 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
15. Tuve dificultades para 
conciliar el sueño 
  
  
  
  
  
16. Tenía oleadas de sentimientos 
intensos al respecto.  
  
  
  
  
  
17. Trate de eliminarlo de mi 
memoria. 
  
  
  
  
  
18. Tenía dificultades para 
concentrarme. 
  
  
  
  
  
19. Los recordatorios me 
causaron reacciones físicas, 
como sudoración, dificultad 
para respirar, náusea o 
palpitaciones. 
  
  
  
  
  
20. Tenía sueños sobre ello. 
  
  
  
  
  
21. Me sentía vigilante y en 
guardia. 
  
  
  
  
  
22. Trataba de no hablar de ello. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
Gracias por permitirnos aprender más acerca de cómo 
podemos ayudar a los pacientes y sus familias en PICU.  
Envíe esta encuesta en el sobre proporcionado. 
 

 
 
 
 
 
 
 
Thank you for helping us know more about communication in the 
pediatric intensive care unit (PICU). This survey asks you for 
information about your experience in the PICU, about your 
reactions to the PICU Supports program, and about yourself.  
Please complete this survey and return it in the envelope provided. 
 
Parent Survey 4  
This survey takes approximately 30-45 minutes to complete 
 
Today’s date is:  
 
 
 
 
Month XX 
Day XX 
Year XXXX 

Parent Survey 4 
         Page 2B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
The following questions ask you to rate various aspects of the PICU Supports program. Please select 
the answer that best reflects your experience. 
 
 
Not at All 
Helpful 
Not Very 
Helpful 
Somewhat 
Helpful 
Extremely 
Helpful 
Unable to 
Assess 
1. How well did PICU Supports help 
with communication in the PICU? 
  
  
  
  
  
 
 
 
During your child’s stay in the PICU, did PICU Supports have a positive impact on: 
 
 
 
    Yes 
    No 
2. The quality of communication between you 
and the healthcare team?  
  
  
3. The quality of communication within the 
healthcare team (how healthcare team 
members communicated with each other)? 
  
  
4. The timeliness of communication between 
you and the healthcare team? 
  
  
5. Your conversations with the healthcare team 
about your values and preferences for your 
child’s care? 
  
  
6. Your hospital experience? 
  
  
7. The family-centeredness of care delivered? 
  
  
 
 
 
 
 
 
 

Parent Survey 4 
       Page 3 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
In your view, how useful were the following parts of PICU Supports: 
 
 
Useless 
Not 
Very 
Useful 
Very 
Useful 
Extremely  
Useful 
 
Did Not 
Use 
8. The Navigator’s weekday visits with 
you. 
  
  
  
  
  
9. The communication log kept at your 
child’s bedside. 
  
  
  
  
  
10. The regular family meetings organized 
by the navigator. 
  
  
  
  
  
11. The PICU Handbook that you 
received. 
  
  
  
  
  
12. The list of questions in the section of 
the PICU Handbook called “What are 
some questions you might want to 
ask?” 
  
  
  
  
  
13. The calendar/diary in the back of the 
PICU Handbook. 
  
  
  
  
  
14. Any informational/educational 
materials given to you. 
  
  
  
  
  
 
 
15. Please comment on any parts of PICU Supports that you found useful. 
 
 
 
 
 
 
 
 
 

Parent Survey 4 
       Page 4 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
16. Please comment on any parts of PICU Supports that you did not like. 
 
 
 
 
 
 
17. How might we improve PICU Supports? 
 
 
 
 
 
 
18. Please tell us any other questions/comments you have about PICU Supports or being in the PICU? 
 
 

Parent Survey 4 
       Page 5 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
Parent Satisfaction with Care in the Intensive Care Unit © 
pFS-ICU (24) 
 
How are we doing? 
Your opinions about your child’s ICU stay 
 
The questions that follow ask YOU about your child’s current ICU admission. We understand that 
there have been many doctors and nurses and other staff involved in caring for your child. We know 
that there may be exceptions, but we are interested in your overall assessment of the quality of 
care we are delivering. We understand that this is probably a very difficult time for you and your 
family. We would appreciate you taking the time to provide us with your opinions. Please take a 
moment to tell us what we are doing well and what we can do to make our ICU better. Please be 
assured that all responses are confidential. The doctors and nurses who are looking after your child 
will not be able to identify your response. 
PART I : SATISFACTION WITH CARE  
Please mark an “X” in the ONE box that best describes your feelings. If the question does not apply to 
your child’s stay then please mark “not applicable” (N/A). 
How did we treat your child (the patient)? 
1. Concern and caring by the ICU staff (the courtesy, respect, and compassion your child [the patient] 
was given) 
 
Symptoms management (how well the ICU staff assessed and treated your child’s symptoms): 
2. Pain 
 
3. Breathlessness 
 
4. Agitation 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
       Page 6 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
How did we treat you? 
5. Consideration of your needs (how well the ICU staff showed an interest in your needs): 
 
6. Emotional support (how well the ICU staff provided emotional support): 
 
7. Coordination of care (the teamwork of all the ICU staff who took care of your child): 
 
8. Concern and caring by ICU staff (the courtesy, respect, and compassion you were given): 
 
Nurses 
9. Skill and competence of ICU nurses (how well the nurses cared for your child): 
 
10. Frequency of communication with ICU nurses (how often nurses communicated to you about your 
child’s condition): 
 
Physicians (all doctors, including residents and fellows) 
11. Skill and competence of ICU doctors (how well doctors cared for your child): 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
       Page 7 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
The ICU 
12. Atmosphere of ICU was? 
 
The Waiting Room 
13. The atmosphere in the ICU waiting room was? 
 
14. Some people want everything done for their health problems while others do not want a lot 
done. How satisfied are you with the level or amount of health care your child received in the 
ICU.  
 
 Very dissatisfied 
 Slightly dissatisfied 
 Mostly satisfied 
 Very satisfied 
 Completely satisfied 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
       Page 8 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
PART 2: PARENT, CAREGIVER, OR GUARDIAN SATISFACTION WITH 
DECISION-MAKING AROUND CARE OF CRITICALLY ILL PATIENTS 
 
This part of the questionnaire is designed to measure how you feel about YOUR involvement in 
decisions related to your child's health care.  In the Intensive Care Unit (ICU), your child may receive 
care from different people.  We would like you to think about all the care your child has received when 
you are answering the questions. 
Please mark an “X” in the ONE box that best describes your feelings.  
 
INFORMATION NEEDS 
 
15. Frequency of communication with ICU doctors (how often doctors communicated to you about your 
child’s condition): 
 
16. Ease of getting information (willingness of ICU staff to answer your questions): 
 
17. Understanding of information (how well ICU staff provided you with explanations that you 
understood): 
 
18. Honesty of information (the honesty of information provided to you about your child’s condition): 
 
19. Completeness of information (how well ICU staff informed you what was happening to your child and 
why things were being done): 
 
20. Consistency of information (the consistency of information provided to you about your child’s 
condition – did you get a similar story from the doctor, nurse, etc.): 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
       Page 9 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
 How are we doing? 
Your opinions about your child’s ICU stay 
 
PROCESS OF MAKING DECISIONS 
 
During your child’s stay in the ICU, many important decisions are made regarding the health care she 
or he receives. From the following questions, pick one answer from each of the following set of ideas 
that best matches your views: 
 
21. Did you feel included in the decision making process? 
 I felt very excluded 
 I felt somewhat excluded 
 I felt neither included nor excluded from the decision making process 
 I felt somewhat included 
 I felt very included 
 
22. Did you feel supported during the decision making process? 
 I felt totally unsupported 
 I felt slightly unsupported 
 I felt neither supported nor unsupported 
 I felt supported 
 I felt very supported 
 
23. Did you feel you had control over the care of your child? 
 I felt really out of control and that the health care system took over and dictated the care my 
child received 
 I felt somewhat out of control and that the health care system took over and dictated the care 
my child received 
 I felt neither in control nor out of control 
 I felt I had some control over the care my child received 
 I felt that I had good control over the care my child received 
 
24. When making decisions, did you have adequate time to have your concerns addressed and 
questions answered? 
 I could have used more time 
 I had adequate time 
 
 
 
 

Parent Survey 4 
       Page 10 B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
The following questions are related to team collaboration during decision making for your child. 
Please circle the number that best represents your judgment about the team process. 
 
 
1. Team members planned together to make decisions about care for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
 
 
 
 
 
 
     
2. Open communication between team members took place as decisions were made for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
3. Decision-making responsibilities for your child were shared among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
4. Team members cooperated in making decisions. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
5.  In making decisions, all team members’ concerns about your child’s need were considered. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
6. Decision-making for your child was coordinated among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
7. How much collaboration among team members occurred in making decisions for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 No   
                                                         
      
 
 
 
 
 
Complete 
 
 Collaboration  
                                                                      
 
 
 
Collaboration 
 
 
8. How satisfied are you with the way decisions were made for your child? That is with the 
decision-making process, not necessarily with the decision itself. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
    
 Not Satisfied 
 
                                                                
     
 
         Very Satisfied 
 
9. How satisfied were you with decisions made for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied 
                                                               
 
  
 
         Very Satisfied 
 
 
 
©J. Baggs, 1992 
 
 

 
 
Parent Survey 4 
 
Page 11B 
Please continue on the next page  
Version Date:  
Participant ID: 
 
The following questions are about decision making in the PICU. 
 
1. Please write down the MOST important decision made for your child while he/she was in 
the PICU. 
 
 
 
For the following questions, please think about the decision you have identified above.   
Then, please mark an “X” in the ONE box per row that best describes your feelings now 
about this decision. 
 
Strongly 
Agree 
Agree 
Neither 
Agree 
Nor 
Disagree 
Disagree 
Strongly 
Disagree 
2. It was the right decision. 
  
  
  
  
  
3. I regret the choice that was 
made. 
  
  
  
  
  
4. I would go for the same choice 
if I had to do it over again. 
  
  
  
  
  
5. The choice did my child a lot 
of harm. 
  
  
  
  
  
6. The decision was a wise one. 
  
  
  
  
  
 
 
 
 

 
 
Parent Survey 4 
 
Page 12B 
Please continue on the next page  
Version Date:  
Participant ID: 
 
Please respond to each statement by marking an “X” in one box per row. 
 
In the past 7 days… 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt worthless. 
  
  
  
  
  
2. I felt helpless. 
  
  
  
  
  
3. I felt depressed. 
  
  
  
  
  
4. I felt hopeless. 
  
  
  
  
  
5. I felt like a failure. 
  
  
  
  
  
6. I felt unhappy. 
  
  
  
  
  
7. I felt that I had nothing to look 
forward to. 
  
  
  
  
  
8. I felt that nothing could cheer me 
up. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
 
 
 

 
 
Parent Survey 4 
 
Page 13B 
Please continue on the next page  
Version Date:  
Participant ID: 
 
Please respond to each statement by marking an “X” in one box per row. 
 
In the past 7 days… 
 
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt fearful. 
  
  
  
  
  
2. I found it hard to focus on 
anything other than my 
anxiety. 
  
  
  
  
  
3. My worries overwhelmed me. 
  
  
  
  
  
4. I felt uneasy. 
  
  
  
  
  
5. I felt nervous. 
  
  
  
  
  
6. I felt like I needed help for my 
anxiety. 
  
  
  
  
  
7. I felt anxious. 
  
  
  
  
  
8. I felt tense. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 
Please respond to each statement by marking an “X” in one box per row. 
 

 
 
Parent Survey 4 
 
Page 14B 
Please continue on the next page  
Version Date:  
Participant ID: 
 
 
 
 
 
  
Poor  
Fair 
Good 
Very 
Good 
Excellent 
1. In general, would you say your 
health is: 
  
  
  
  
  
2. In general, would you say your 
quality of life is: 
  
  
  
  
  
3. In general, how would you rate 
your physical health? 
  
  
  
  
  
4. In general, how would you rate 
your mental health, including your 
mood and your ability to think? 
  
  
  
  
  
5. In general, how would you rate you 
satisfaction with your social 
activities and relationships? 
  
  
  
  
  
6. In general, how would you rate 
how well you carry out your usual 
social activities and roles? (This 
includes activities at home, at 
work, and in your community, and 
responsibilities as a parent, child, 
spouse, employee, friend, etc.) 
  
  
  
  
  
 
 
 
 
 
 
 
Not at all  
A little  
Moderately 
Mostly 
Completely 
7. To what extent are you able to 
carry out your everyday physical 
activities such as walking, 
climbing stairs, carrying groceries, 
or moving a chair? 
  
  
  
  
  
 
 
 
 
 
 
 
Never 
 
Rarely 
 
Sometimes 
 
Often 
 
Always 
 
8. How often have you been bothered 
by emotional problems such as 
feeling anxious, depressed, or 
irritable? 
  
  
  
  
  

 
 
Parent Survey 4 
 
Page 15B 
Please continue on the next page  
Version Date:  
Participant ID: 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. How would you rate 
your pain on average? 
                      
 
No 
Pain 
 
 
 
 
 
 
 
 
 
 
 Worst     
imaginable    
  pain 
 
 
 
 
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
None 
Mild 
Moderate 
Severe 
Very 
Severe 
9. How would you rate your 
fatigue on average?  
  
  
  
  
  
 
 
 
 
 
 

Parent Survey 4 
         Page 16B 
                
Please continue on the next page 
      Version Date:  
Participant ID: 
 
 
Below is a list of difficulties people sometimes have after stressful life events.  Please read each item 
and then indicate how distressing each difficulty has been for you during the past 7 days with 
respect to your child being in the PICU.  
How much were you distressed or bothered by these difficulties? 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
1. Any reminder brought back 
feelings about it. 
  
  
  
  
  
2. I had trouble staying asleep. 
  
  
  
  
  
3. Other things kept making me 
think about it. 
  
  
  
  
  
4. I felt irritable and angry. 
  
  
  
  
  
5. I avoided letting myself get 
upset when I thought about it 
or was reminded of it. 
  
  
  
  
  
6. I thought about it when I didn't 
mean to. 
  
  
  
  
  
7. I felt as if it hadn't happened or 
wasn't real. 
  
  
  
  
  
8. I stayed away from reminders 
of it. 
  
  
  
  
  
9. Pictures about it popped into 
my head. 
  
  
  
  
  
10. I was jumpy and easily 
startled. 
  
  
  
  
  
11. I tried not to think about it. 
  
  
  
  
  
12. I was aware that I still had a lot 
of feelings about it, but I didn't 
deal with them. 
  
  
  
  
  
13. My feelings about it were kind 
of numb. 
  
  
  
  
  
14. I found myself acting or feeling 
like I was back at that time. 
  
  
  
  
  

 
 
Parent Survey 4 
 
 
Page 17B 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
15. I had trouble falling asleep. 
  
  
  
  
  
16. I had waves of strong feelings 
about it.  
  
  
  
  
  
17. I tried to remove it from my 
memory. 
  
  
  
  
  
18. I had trouble concentrating. 
  
  
  
  
  
19. Reminders of it caused me to 
have physical reactions, such 
as sweating, trouble breathing, 
nausea, or a pounding heart. 
  
  
  
  
  
20. I had dreams about it. 
  
  
  
  
  
21. I felt watchful and on-guard. 
  
  
  
  
  
22. I tried not to talk about it. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
Thank you very much for helping us know more about how to 
help the patients and families in the PICU.  
Please return this survey in the envelope provided. 
 

 
  
 
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos Pediátricos 
(PICU). Esta encuesta aborda preguntas acerca de su experiencia 
en PICU, sus reacciones respecto al programa PICU Supports y 
acerca de usted. Le pedimos que la conteste y la envíe en el sobre 
proporcionado. 
 
Encuesta 4 para el padre o la madre de familia  
La encuesta toma aproximadamente de 30 a 45 minutos en contestarse 
 
Fecha de hoy:  
 
 
 
 
Mes XX 
Día XX 
Año XXXX 

Parent Survey 4 
Page 2B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
Las siguientes preguntas le piden calificar varios aspectos del programa PICU Supports. Elija la 
respuesta que mejor describa su experiencia.  
 
 
No fue útil 
en lo 
absoluto 
No fue 
muy útil 
Fue un 
poco útil 
Increíble
mente útil 
No lo 
puedo 
evaluar 
1. ¿Qué tan útil fue PICU Supports 
respecto a la comunicación en la 
unidad? 
  
  
  
  
  
 
 
Durante la estancia de su hijo en PICU, el programa PICU Supports tuvo in 
impacto positivo en: 
 
 
 
      Sí 
      No 
2. La calidad de la comunicación entre usted y 
el equipo médico  
  
  
3. La calidad de la comunicación entre el 
equipo médico (cómo se comunican los 
miembros entre ellos) 
  
  
4. La calidad de la comunicación entre usted y 
el equipo médico 
 
  
  
5. Sus conversaciones con el equipo médico 
acerca de los valores y preferencias respecto 
a la atención médica de su hijo. 
  
  
6. Su experiencia en el hospital 
  
  
7. La posición de la familia respecto a la 
atención recibida (la atención debe centrarse 
en la familia) 
  
  
 
 
 
 
 

Parent Survey 4 
Page 3B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
Desde su punto de vista, ¿qué tan útiles fueron las siguientes partes de PICU Supports?: 
 
Inútil 
No muy 
útil 
Muy 
útil 
 
Extremadamente 
útil 
 
No lo 
utilicé 
8. Las visitas del Navegador durante la 
semana 
  
  
  
  
  
9. El diario de comunicación en la 
habitación de su hijo. 
  
  
  
  
  
10. Las reuniones familiares que 
coordinó regularmente el navegador. 
  
  
  
  
  
11. El Manual de PICU que usted 
recibió. 
  
  
  
  
  
12. La lista de preguntas en la sección 
del Manual de PICU, llamada 
“¿Cuáles son algunas preguntas que 
le gustaría hacer?” 
 
  
  
  
  
  
13. El calendario o diario al final del 
Manual PICU. 
  
  
  
  
  
14. Todo material informativo o 
educativo que se le entregó. 
  
  
  
  
  
 
 
15. Haga un comentario acerca de las partes de PICU Support que le parecieron útiles.  
 
 
 
 
 
 
 
 

Parent Survey 4 
Page 4B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
 
16. Haga un comentario acerca de las partes de PICU Support que no le gustaron.  
 
 
 
 
 
 
17. ¿Cómo podríamos mejorar PICU Supports? 
 
 
 
 
 
 
18. ¿Tienen alguna otra pregunta o comentario?  

Parent Survey 4 
Page 5B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
Satisfacción del padre de familia respecto a la atención en la Unidad de Cuidados Intensivos 
Pediátricos (Parent Satisfaction with Care in the Intensive Care Unit ©) 
pFS-ICU (24) 
 
¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
Las siguientes preguntas para USTED abordan aspectos de la admisión actual de su hijo en la 
unidad de cuidados intensivos. Sabemos que ha habido muchos doctores, enfermeros y otro 
personal que ha participado en el cuidado de su hijo. Entendemos que puede haber excepciones, 
pero nos interesa su opinión en general acerca de la calidad de la atención que le estamos 
proporcionando. Estamos conscientes de que probablemente usted y su familia están atravesando 
por un momento muy difícil. Agradecemos que se tome el tiempo de darnos su opinión. Le pedimos 
que se tome un momento para decirnos lo que estamos haciendo bien y lo que podemos mejorar en 
nuestra ICU. Tenga por seguro que todas las respuestas son confidenciales. Los médicos y 
enfermeros que cuidan de su hijo no podrán identificar sus respuestas.  
PARTE I: SATISFACCIÓN CON LA ATENCIÓN  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión. Si la pregunta no 
corresponde a la estancia de su hijo, entonces marque “no corresponde” (N/A). 
Cómo tratamos a su niño (el/la paciente): 
1. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que se 
le dio a su niño [el/la paciente]) 
 
Manejo de síntomas (qué tan bien evaluó y trató el personal de la ICU los síntomas de su niño): 
2.  Dolor 
3. Dificultad al respirar 
 
4. Inquietud 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 6B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
¿Cómo lo tratamos a usted? 
 
5. Tomar en cuenta sus necesidades (qué tan bien mostró interés el personal de la ICU en las 
necesidades de usted): 
 
 
6. Apoyo emocional (qué tan bien le proporcionó apoyo emocional el personal de la ICU): 
 
 
7. Coordinación del cuidado (el trabajo de equipo de todo el personal de la ICU que cuidó a su niño): 
 
 
8. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que le 
fueron proporcionados a usted): 
 
ENFERMERAS 
 
9. Destreza y capacidad de las enfermeras de la ICU (qué tan bien cuidan las enfermeras a su niño): 
 
 
10. Frecuencia de comunicación con las enfermeras de la ICU (qué tan frecuentemente se 
comunicaron con usted las enfermeras de la ICU en relación con la condición de su niño): 
 
 
MÉDICOS (todos los médicos, incluyendo residentes e internos) 
11. Destreza y capacidad de los médicos de la ICU (qué tan bien cuidaron los médicos a su niño): 
 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 7B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
LA ICU 
12. ¿Cómo fue el ambiente de la ICU? 
 
LA SALA DE ESPERA 
 
13. ¿Cómo fue el ambiente en la sala de espera de la ICU? 
 
14. A algunas personas les gusta que se haga todo en relación con sus problemas de salud, 
mientras que a otras no les gusta que se haga mucho.  ¿Qué tan satisfecho estuvo usted con el 
nivel o cantidad de cuidados de la salud que recibió su niño en la ICU? 
 
 muy insatisfecho    
 un poco insatisfecho    
 generalmente satisfecho 
 muy satisfecho    
 completamente satisfecho 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 8B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
PARTE 2: SATISFACCIÓN DEL PADRE O MADRE DE FAMILIA, PERSONA A CARGO DEL PACIENTE O 
TUTOR CON LA TOMA DE DECISIONES RESPECTO A LA ATENCIÓN QUE RECIBEN LOS PACIENTES 
EN ESTADO CRÍTICO 
Esta parte del cuestionario está diseñada para medir cómo se siente sobre SU participación en las decisiones 
relacionadas con la atención médica de su hijo. En la Unidad de Cuidados Intensivos (ICU), su hijo fue 
atendido por diferentes personas. Queremos que al contestar estas preguntas piense en toda la atención que 
ha recibido su hijo.  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión.   
NECESIDADES DE INFORMACIÓN 
 
15. Frecuencia de la comunicación con los médicos de la ICU (qué tan frecuentemente se 
comunicaron con usted los médicos de la ICU en relación con la condición de su niño): 
 
16. Facilidad para obtener información (buena disposición del personal de la ICU para responder a sus 
preguntas): 
 
 
17. Comprensión de la información (qué tan bien le proporcionó el personal de la ICU explicaciones que 
usted comprendió): 
 
18. Honestidad de la información (la honestidad de la información que le fue proporcionada a usted 
respecto de la condición de su niño): 
19. Totalidad/Integridad de la información (qué tan bien le informo a usted el personal de la ICU sobre 
lo que estaba sucediendo con su niño y la razón por la que se estaban haciendo las cosas): 
 
20. Consistencia de la información (la consistencia de la información que le fue proporcionada a usted 
respecto a la condición de su niño – obtuvo usted información similar por parte del médico, enfermera, 
etc.): 
 
 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
   
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 4 
Page 9B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 ¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
PROCESO DE TOMA DE DECISIONES 
 
Durante la estancia de su niño en la ICU, se toman muchas decisiones importantes respecto del cuidado de la 
salud que él o ella recibe.  En las siguientes preguntas, elija una respuesta del siguiente grupo de ideas que 
mejor se ajuste a sus puntos de vista:  
21. ¿Se sintió usted incluido en el proceso de toma de decisiones? 
 Me sentí muy excluido 
 Me sentí un poco excluido 
 No me sentí ni incluido ni excluido en el proceso de toma de decisiones 
 Me sentí un poco incluido 
 Me sentí muy incluido 
 
22. ¿Se sintió usted apoyado durante el proceso de toma de decisiones? 
  Me sentí totalmente agobiado 
 Me sentí un poco agobiado 
 No me sentí ni agobiado ni apoyado 
 Me sentí apoyado 
 Me sentí muy apoyado  
 
23. ¿Sintió usted que tenía control sobre el cuidado de su niño? 
 Realmente sentí que no tenía control y que el sistema de cuidados de la salud asumió el control 
y ordenó el cuidado que mi niño recibió 
 Sentí un poco que no tenía control y que el sistema de cuidados de la salud asumió el control y 
ordenó el cuidado que mi niño recibió 
 No sentí que no tuviera control ni que tuviera control 
 Sentí que tenía algo de control sobre el cuidado que mi niño recibió 
 Sentí que tenía buen control sobre el cuidado que mi niño recibió 
 
24. Al tomar decisiones, ¿tuvo usted el tiempo suficiente para tratar sus inquietudes y que le 
respondieran sus preguntas? 
 Podría haber utilizado más tiempo 
 Tuve el tiempo suficiente 
 
 
 
 

Parent Survey 4 
Page 10B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
Las siguientes preguntas están relacionadas a las decisiones tomadas respecto a su hijo. Encierre 
en un círculo el número que mejor represente su opinión respecto al proceso del equipo. 
 
1. Los miembros del equipo planearon en conjunto tomar las decisiones respecto a la atención de 
su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
2. Los miembros del equipo tuvieron una comunicación abierta entre ellos al tomar las decisiones 
para su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
 
 
 
 
 
 
 
 
 
 
 
 
3. La responsabilidad de la toma de decisiones para su hijo se compartió entre los miembros del 
equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
             
 
4. Los miembros del equipo colaboraron juntos en la toma de decisiones. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
 
 
 
 
 
 
 
 
                                                               
5. En el proceso de la toma de decisiones, se tomaron en cuenta las inquietudes de todos los 
miembros del equipo respecto a las necesidades de hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
6. La toma de decisiones para su hijo se coordinó entre los miembros del equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                
  7 
 
Completamente  
 
 
 
 
 
 
 
 
 
Completamente 
 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de acuerdo 
 
 
 
7. ¿Qué tanto colaboraron los miembros del equipo en la toma de decisiones para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
       
  7 
 
No colaboraron                                                           
 
 
 
     
 
 Colaboraron  
 
 
 
 
 
 
 
 
 
 
 
 
 
completamente 
 
8.  ¿Qué tan satisfecho está usted con la forma en que se tomaron las decisiones para su hijo? 
Esto se refiere al proceso de toma de decisiones, no necesariamente a las decisiones mismas. 
 
 
  1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7  
 
 Nada satisfecho 
                                                      
 
     
 
         
 Muy satisfecho 
 
9. ¿Qué tan satisfecho estuvo usted con las decisiones que se tomaron para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        
 7 
 
Nada satisfecho      
 
 
 
 
 
 
 
 
 
Muy satisfecho               
 
 
 
 
 
 
  
          
©J. Baggs, 1992 

Parent Survey 4 
Page 11B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
                                                               
  
 
 
Las siguientes preguntas tratan acerca de la toma de decisiones en PICU. 
 
1. Describa la decisión MÁS IMPORTANTE que tomó para su hijo mientras se encontraba 
en PICU: 
 
 
 
Para contestar las siguientes preguntas, piense en la decisión que acaba de anotar.   
Después, marque con una “X”, sólo UNA casilla por fila que mejor describa sus 
sentimientos actuales respecto a esta decisión. 
 
Completa- 
mente de 
acuerdo 
 
De 
acuerdo 
 
Ni de 
acuerdo ni 
en 
desacuerdo 
 
En 
desacuerdo 
 
Completa-
mente en 
desacuerdo 
 
2. Fue la decisión correcta 
  
  
  
  
  
3. Me arrepiento de la 
decisión que se tomó 
  
  
  
  
  
4. Si tuviera que volver a 
hacerlo, tomaría la misma 
decisión 
  
  
  
  
  
5. La decisión lastimó 
mucho a mi hijo(a) 
  
  
  
  
  
6. La decisión fue muy sabia 
  
  
  
  
  
 
 

Parent Survey 4 
Page 12B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
En los últimos 7 días... 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Senti que no valia nada 
  
  
  
  
  
2. Me senti indefenso/a (que no 
podia hacer nada para 
ayudarme) 
  
  
  
  
  
3. Me sentí deprimido/a 
  
  
  
  
  
4. Me sentí desesperanzado/a 
  
  
  
  
  
5. Me sentí fracasado/a 
  
  
  
  
  
6. Me sentí descontento/a 
  
  
  
  
  
7. Sentí que nada me ilusionaba 
  
  
  
  
  
8. Sentí que nada me podía 
animar 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 

Parent Survey 4 
Page 13B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
 
 En los últimos 7 días...  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
1. Sentí miedo 
  
  
  
  
  
2. Tuve dificultad para concentrarme 
en otra cosa que no fuera mi 
ansiedad 
  
  
  
  
  
3. Mis inquietudes fueron demasiado 
para mi 
  
  
  
  
  
4. Me sentí intranquilo/a 
  
  
  
  
  
5. Me sentí nervioso/a 
  
  
  
  
  
6. Sentí que necesitaba ayuda para 
controlar mi ansiedad. 
  
  
  
  
  
7. Sentí ansiedad 
  
  
  
  
  
8. Me sentí tenso/a 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 
 

Parent Survey 4 
Page 14B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
  
Mala  
Pasable 
Buena 
Muy 
buena 
Excelente 
1. En general, diría que su salud es 
 
  
  
  
  
2. En general, diría que su calidad de vida 
es 
 
  
  
  
  
3. En general, ¿cómo calificaría su salud 
física? 
 
  
  
  
  
4. En general, ¿cómo calificaría su salud 
mental, incluidos su estado de ánimo y 
su capacidad para pensar? 
 
  
  
  
  
5. En general, ¿cómo calificaría su 
satisfacción con sus actividades 
sociales y sus relaciones con otras 
personas? 
 
  
  
  
  
6. En general, califique en qué medida 
puede realizar sus actividades sociales 
y funciones habituales. (Esto 
comprende las actividades en casa, en 
el trabajo y en el área donde reside, así 
como sus responsabilidades como 
padre o madre, hijo/a, cónyuge, 
empleado/a, amigo/a, etc.) 
 
 
  
  
  
  
 
Para 
nada 
Un poco 
Moderada
-mente 
En su 
mayoría 
Completame-
nte 
 
7. ¿En qué medida puede realizar sus 
actividades físicas diarias, como 
caminar, subir escaleras, cargar las 
compras o mover una silla? 
 
  
  
  
  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
8. ¿Con qué frecuencia le han afectado 
problemas emocionales como sentir 
ansiedad, depresión o irritabilidad ? 
 
  
  
  
  

Parent Survey 4 
Page 15B 
Continúe en la siguiente página 
Version Date:  
Participant ID: 
 
 
 
 
 
Ninguno 
Leve 
Moderado 
Intenso 
Muy 
intenso 
9. En promedio, ¿cómo calificaría su 
cansancio? 
  
  
  
  
  
 
 
 
 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. En promedio, ¿cómo 
calificaría su dolor ? 
                      
 
Ning
ún 
dolor  
 
 
 
 
 
 
 
 
 
 
El peor 
dolor 
imaginable  
 

 
  
A continuación se encuentra una lista dificultades que en ocasiones presentan algunas personas 
después de un suceso estresante en su vida. Lea cada declaración y después indique que tan 
estresante ha sido para usted cada dificultad presentada durante los últimos 7 días, con respecto a 
la hospitalización de su hijo en PICU.  
¿Qué tanto le estresaron o molestaron estas dificultades? 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
1. Todo lo que le trajo recuerdos 
y le hizo revivir sus 
sentimientos. 
  
  
  
  
  
2. Tuve dificultades para 
mantenerme dormido. 
 
  
  
  
  
  
3. Otras cosas me lo recordaban 
constantemente. 
  
  
  
  
  
4. Me sentí irritable y enojado. 
  
  
  
  
  
5. Evitaba molestarme cuando 
pensaba en ello o algo me lo 
recordaba. 
  
  
  
  
  
6. Pensaba en ello sin quererlo. 
  
  
  
  
  
7. Sentí como si no hubiera 
pasado o no hubiera sido real. 
  
  
  
  
  
8. Me alejé de lo que me hacía 
recordarlo. 
  
  
  
  
  
9. Imágenes sobre ello me venían 
a la cabeza. 
  
  
  
  
  
10. Estaba nervioso y me 
sorprendía fácilmente. 
  
  
  
  
  
11. Trataba de no pensar en ello. 
  
  
  
  
  
12. Estaba consciente de que 
todavía tenía muchos 
sentimientos, pero no hice 
nada al respecto. 
  
  
  
  
  
13. Estaba insensible a ello. 
  
  
  
  
  
14. Me encontré actuando y 
sintiendo que estaba de 
regreso en ese momento. 
  
  
  
  
  
 
 
 
 
 
 
 

Parent Survey 4 
 
Page 17B 
 
Version Date:  
Participant ID: 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
15. Tuve dificultades para 
conciliar el sueño 
  
  
  
  
  
16. Tenía oleadas de sentimientos 
intensos al respecto.  
  
  
  
  
  
17. Trate de eliminarlo de mi 
memoria. 
  
  
  
  
  
18. Tenía dificultades para 
concentrarme. 
  
  
  
  
  
19. Los recordatorios me 
causaron reacciones físicas, 
como sudoración, dificultad 
para respirar, náusea o 
palpitaciones. 
  
  
  
  
  
20. Tenía sueños sobre ello. 
  
  
  
  
  
21. Me sentía vigilante y en 
guardia. 
  
  
  
  
  
22. Trataba de no hablar de ello. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
Gracias por permitirnos aprender más acerca de cómo 
podemos ayudar a los pacientes y sus familias en PICU.  
Envíe esta encuesta en el sobre proporcionado. 
 

 
 
: 
 
 
 
 
 
 
 
Thank you for helping us know more about communication in the 
pediatric intensive care unit (PICU). This survey asks you for 
information about your experience in the PICU, your reactions to 
the brochure you received, and about yourself.  Please complete 
this survey and return it in the envelope provided. 
Parent Survey 5  
This survey takes approximately 30-45 minutes to complete 
 
 
Today’s date is:  
 
 
 
Month XX 
Day XX 
Year XXXX 

Parent Survey 5 
Page 2 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
The following questions ask you to rate various aspects of the PICU supports intervention. Please 
select the answer that best reflects your experience.  
 
 
Useless 
Not Very 
Useful 
Very 
Useful  
Extremely  
Useful 
Did Not 
Use 
1. How useful to you was the brochure 
that you received at the beginning of 
your stay in the PICU? 
  
  
  
  
  
 
 
2. Please comment on any parts of the brochure that you found useful. 
 
 
 
 
 
 
3. Please comment on any parts of the brochure that you did not like. 
 
 
 
 
 
 
4. How might we improve the brochure? 
 
 
 
 
 

Parent Survey 5 
Page 3 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
17. Please tell us any other questions/comments you have about the brochure or being in the PICU? 
 
 

Parent Survey 5 
Page 4 A 
Please continue on the next page 
Version Date:  
Participant ID: 
Parent Satisfaction with Care in the Intensive Care Unit © 
pFS-ICU (24) 
 
How are we doing? 
Your opinions about your child’s ICU stay 
 
The questions that follow ask YOU about your child’s current ICU admission. We understand that 
there have been many doctors and nurses and other staff involved in caring for your child. We know 
that there may be exceptions, but we are interested in your overall assessment of the quality of 
care we are delivering. We understand that this is probably a very difficult time for you and your 
family. We would appreciate you taking the time to provide us with your opinions. Please take a 
moment to tell us what we are doing well and what we can do to make our ICU better. Please be 
assured that all responses are confidential. The doctors and nurses who are looking after your child 
will not be able to identify your response. 
PART I : SATISFACTION WITH CARE  
Please mark an “X” in the ONE box that best describes your feelings. If the question does not apply to 
your child’s stay then please mark “not applicable” (N/A). 
How did we treat your child (the patient)? 
1. Concern and caring by the ICU staff (the courtesy, respect, and compassion your child [the patient] 
was given) 
 
Symptoms management (how well the ICU staff assessed and treated your child’s symptoms): 
2. Pain 
 
3. Breathlessness 
 
4. Agitation 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 5 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
How did we treat you? 
5. Consideration of your needs (how well the ICU staff showed an interest in your needs): 
 
6. Emotional support (how well the ICU staff provided emotional support): 
 
7. Coordination of care (the teamwork of all the ICU staff who took care of your child): 
 
8. Concern and caring by ICU staff (the courtesy, respect, and compassion you were given): 
 
Nurses 
9. Skill and competence of ICU nurses (how well the nurses cared for your child): 
 
10. Frequency of communication with ICU nurses (how often nurses communicated to you about your 
child’s condition): 
 
Physicians (all doctors, including residents and fellows) 
11. Skill and competence of ICU doctors (how well doctors cared for your child): 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 6 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
The ICU 
12. Atmosphere of ICU was? 
 
The Waiting Room 
13. The atmosphere in the ICU waiting room was? 
 
14. Some people want everything done for their health problems while others do not want a lot 
done. How satisfied are you with the level or amount of health care your child received in the 
ICU.  
 
 Very dissatisfied 
 Slightly dissatisfied 
 Mostly satisfied 
 Very satisfied 
 Completely satisfied 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 7 A 
Please continue on the next page 
Version Date:  
Participant ID: 
PART 2: PARENT, CAREGIVER, OR GUARDIAN SATISFACTION WITH 
DECISION-MAKING AROUND CARE OF CRITICALLY ILL PATIENTS 
 
This part of the questionnaire is designed to measure how you feel about YOUR involvement in 
decisions related to your child's health care.  In the Intensive Care Unit (ICU), your child may receive 
care from different people.  We would like you to think about all the care your child has received when 
you are answering the questions. 
Please mark an “X” in the ONE box that best describes your feelings.  
 
INFORMATION NEEDS 
 
15. Frequency of communication with ICU doctors (how often doctors communicated to you about your 
child’s condition): 
 
16. Ease of getting information (willingness of ICU staff to answer your questions): 
 
17. Understanding of information (how well ICU staff provided you with explanations that you 
understood): 
 
18. Honesty of information (the honesty of information provided to you about your child’s condition): 
 
19. Completeness of information (how well ICU staff informed you what was happening to your child and 
why things were being done): 
 
20. Consistency of information (the consistency of information provided to you about your child’s 
condition – did you get a similar story from the doctor, nurse, etc.): 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 8 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 How are we doing? 
Your opinions about your child’s ICU stay 
 
PROCESS OF MAKING DECISIONS 
 
During your child’s stay in the ICU, many important decisions are made regarding the health care she 
or he receives. From the following questions, pick one answer from each of the following set of ideas 
that best matches your views: 
 
21. Did you feel included in the decision making process? 
 I felt very excluded 
 I felt somewhat excluded 
 I felt neither included nor excluded from the decision making process 
 I felt somewhat included 
 I felt very included 
 
22. Did you feel supported during the decision making process? 
 I felt totally unsupported 
 I felt slightly unsupported 
 I felt neither supported nor unsupported 
 I felt supported 
 I felt very supported 
 
23. Did you feel you had control over the care of your child? 
 I felt really out of control and that the health care system took over and dictated the care my 
child received 
 I felt somewhat out of control and that the health care system took over and dictated the care 
my child received 
 I felt neither in control nor out of control 
 I felt I had some control over the care my child received 
 I felt that I had good control over the care my child received 
 
24. When making decisions, did you have adequate time to have your concerns addressed and 
questions answered? 
 I could have used more time 
 I had adequate time 
 
 
 
 
 

Parent Survey 5 
Page 9 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
25. Which of the following best describes your views? 
 I felt my child’s life was prolonged unnecessarily 
 I felt my child’s life was slightly prolonged unnecessarily 
 I felt my child’s life was neither prolonged nor shortened unnecessarily 
 I felt my child’s life was slightly shortened unnecessarily 
 I felt my child’s life was shortened unnecessarily 
 
26. During the final hours of your child’s life, which of the following best describes 
your views: 
 I felt that he/she was very uncomfortable 
 I felt that he/she was slightly uncomfortable 
 I felt that he/she was mostly comfortable 
 I felt that he/she was very comfortable 
 I felt that he/she was totally comfortable 
 
27. During the last few hours before your child’s death, which of the following best 
describes your views: 
 I felt very abandoned by the health care team 
 I felt abandoned by the health care team 
 I felt neither abandoned nor supported by the health care team 
 I felt supported by the health care team 
 I felt very supported by the health care team 
 

Parent Survey 5 
Page 10 A 
Please continue on the next page 
Version Date:  
Participant ID: 
The following questions are related to team collaboration during decision making for your child. 
Please circle the number that best represents your judgment about the team process. 
 
 
1. Team members planned together to make decisions about care for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
 
 
 
 
 
 
     
2. Open communication between team members took place as decisions were made for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
3. Decision-making responsibilities for your child were shared among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
4. Team members cooperated in making decisions. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
5. In making decisions, all team members’ concerns about your child’s need were considered. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
6. Decision-making for your child was coordinated among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
7. How much collaboration among team members occurred in making decisions for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 No   
                                                         
      
 
 
 
 
 
Complete 
 
 Collaboration  
                                                                      
 
 
 
Collaboration 
 
 
8. How satisfied are you with the way decisions were made for your child? That is with the 
decision-making process, not necessarily with the decision itself. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
    
 Not Satisfied 
 
                                                                
     
 
         Very Satisfied 
 
9. How satisfied were you with decisions made for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied 
                                                               
 
  
 
         Very Satisfied 
 
 
 
©J. Baggs, 1992 
 
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 11 A 
 
Version Date:  
Participant ID: 
 
The following questions are about decision making in the PICU. 
1. Please write down the MOST important decision made for your child while he/she was 
in the PICU. 
 
 
For the following questions, please think about the decision you have identified above.  
Then, please mark an “X” in ONE box per row that best describes your feelings now 
about this decision. 
 
Strongly 
Agree 
Agree 
Neither 
Agree 
Nor 
Disagree 
Disagree 
Strongly 
Disagree 
2. It was the right decision. 
  
  
  
  
  
3. I regret the choice that was 
made. 
  
  
  
  
  
4. I would go for the same choice 
if I had to do it over again. 
  
  
  
  
  
5. The choice did my child a lot 
of harm. 
  
  
  
  
  
6. The decision was a wise one. 
  
  
  
  
  
 
 
 
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 12 A 
 
Version Date:  
Participant ID: 
 
Please respond to each statement by marking and “X” in one box per row. 
 
In the past 7 days...   
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt worthless. 
  
  
  
  
  
2. I felt helpless. 
  
  
  
  
  
3. I felt depressed. 
  
  
  
  
  
4. I felt hopeless. 
  
  
  
  
  
5. I felt like a failure. 
  
  
  
  
  
6. I felt unhappy. 
  
  
  
  
  
7. I felt that I had nothing to look 
forward to. 
  
  
  
  
  
8. I felt that nothing could cheer me 
up. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 13 A 
 
Version Date:  
Participant ID: 
 
Please respond to each statement by marking and “X” in one box per row. 
 
In the past 7 days… 
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt fearful. 
  
  
  
  
  
2. I found it hard to focus on 
anything other than my 
anxiety. 
  
  
  
  
  
3. My worries overwhelmed me. 
  
  
  
  
  
4. I felt uneasy. 
  
  
  
  
  
5. I felt nervous. 
  
  
  
  
  
6. I felt like I needed help for my 
anxiety. 
  
  
  
  
  
7. I felt anxious. 
  
  
  
  
  
8. I felt tense. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 14 A 
 
Version Date:  
Participant ID: 
 
 
 
Please respond to each statement by marking an “X” in one box per row. 
 
 
  
Poor  
Fair 
Good 
Very 
Good 
Excellent 
1. In general, would you say your 
health is: 
  
  
  
  
  
2. In general, would you say your 
quality of life is: 
  
  
  
  
  
3. In general, how would you rate 
your physical health? 
  
  
  
  
  
4. In general, how would you rate 
your mental health, including your 
mood and your ability to think? 
  
  
  
  
  
5. In general, how would you rate you 
satisfaction with your social 
activities and relationships? 
  
  
  
  
  
6. In general, how would you rate 
how well you carry out your usual 
social activities and roles? (This 
includes activities at home, at 
work, and in your community, and 
responsibilities as a parent, child, 
spouse, employee, friend, etc.) 
  
  
  
  
  
 
 
 
 
 
 
 
Not at all  
A little  
Moderately 
Mostly 
Completely 
7. To what extent are you able to 
carry out your everyday physical 
activities such as walking, 
climbing stairs, carrying groceries, 
or moving a chair? 
  
  
  
  
  
 
 
 
 
 
 
 
Never 
 
Rarely 
 
Sometimes 
 
Often 
 
Always 
 
8. How often have you been bothered 
by emotional problems such as 
feeling anxious, depressed, or 
irritable? 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 15 A 
 
Version Date:  
Participant ID: 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. How would you rate your 
pain on average? 
                      
 
No 
Pain 
 
 
 
 
 
 
 
 
 
 
 Worst     
imaginable    
  pain 
 
 
 
 
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
None 
Mild 
Moderately 
Severe 
 
Very 
Severe 
 
9. How would you rate your 
fatigue on average?  
  
  
  
  
  
 
 
 
 
 
 

Parent Survey 5 
Page 16 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 
Below is a list of difficulties people sometimes have after stressful life events.  Please read each item 
and then indicate how distressing each difficulty has been for you during the past 7 days with 
respect to your child being in the PICU.  
How much were you distressed or bothered by these difficulties? 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
1. Any reminder brought back 
feelings about it. 
  
  
  
  
  
2. I had trouble staying asleep. 
  
  
  
  
  
3. Other things kept making me think 
about it. 
  
  
  
  
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4. I felt irritable and angry. 
  
  
  
  
  
5. I avoided letting myself get upset 
when I thought about it or was 
reminded of it. 
  
  
  
  
  
6. I thought about it when I didn't 
mean to. 
  
  
  
  
  
7. I felt as if it hadn't happened or 
wasn't real. 
  
  
  
  
  
8. I stayed away from reminders of it. 
  
  
  
  
  
9. Pictures about it popped into my 
head. 
  
  
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10. I was jumpy and easily startled. 
  
  
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11. I tried not to think about it. 
  
  
  
  
  
12. I was aware that I still had a lot of 
feelings about it, but I didn't deal 
with them. 
  
  
  
  
  
13. My feelings about it were kind of 
numb. 
  
  
  
  
  
14. I found myself acting or feeling 
like I was back at that time. 
  
  
  
  
  

Parent Survey 5 
Page 17 A 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
15. I had trouble falling asleep. 
  
  
  
  
  
16. I had waves of strong feelings 
about it.  
  
  
  
  
  
17. I tried to remove it from my 
memory. 
  
  
  
  
  
18. I had trouble concentrating. 
  
  
  
  
  
19. Reminders of it caused me to have 
physical reactions, such as 
sweating, trouble breathing, 
nausea, or a pounding heart. 
  
  
  
  
  
20. I had dreams about it. 
  
  
  
  
  
21. I felt watchful and on-guard. 
  
  
  
  
  
22. I tried not to talk about it. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 18 A 
Please continue on the next page 
Version Date:  
Participant ID: 
Please mark and “x” in one box per row which best describes how you feel right now. 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I think about my child so much that 
it's hard for me to do things I 
normally do. 
  
  
  
  
  
2. Memories of my child upset me. 
  
  
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  
3. I feel I cannot accept the death of my 
child. 
  
  
  
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4. I feel myself longing for my child. 
  
  
  
  
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5. I feel drawn to places and things 
associated with my child. 
  
  
  
  
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6. I can't help feeling angry about my 
child's death. 
  
  
  
  
  
7. I feel disbelief over what happened. 
  
  
  
  
  
8. I feel stunned or dazed over what 
happened. 
  
  
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  
  
9. Ever since he/she died it is hard for 
me to trust people. 
  
  
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10. Ever since s/he died I feel like I have 
lost the ability to care about other 
people or I feel distant from people I 
care about. 
  
  
  
  
  
11. I have pain in the same area of my 
body or have some of the same 
symptoms as my child had. 
  
  
  
  
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12. I go out of my way to avoid 
reminders of my child. 
  
  
  
  
  
13. I feel that life is empty without my 
child. 
  
  
  
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14. I hear the voice of my child who died 
speak to me. 
  
  
  
  
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15. I see my child who died stand before 
me. 
  
  
  
  
  

Parent Survey 5 
Page 19 A 
 
Version Date:  
Participant ID: 
 
Never 
Rarely 
Sometimes 
Often 
Always 
16. I feel that it is unfair that I should 
live when my child died. 
  
  
  
  
  
17. I feel bitter over my child's death. 
  
  
  
  
  
18. I feel envious of others who have 
not lost their child. 
  
  
  
  
  
19. I feel lonely a great deal of time 
ever since s/he died. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
Thank you very much for helping us know more about how to 
help the patients and families in the PICU.  
Please return this survey in the envelope provided. 
 

 
 
: 
 
 
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos Pediátricos 
(PICU). Esta encuesta aborda preguntas sobre su experiencia en 
PICU, su opinión respecto al folleto que recibió y preguntas acerca 
de usted. Le pedimos que la conteste y la envíe en el sobre 
proporcionado. 
Encuesta 5 para el padre o la madre de familia  
La encuesta toma aproximadamente de 30 a 45 minutos en contestarse 
 
Fecha de hoy:  
 
 
 
Mes XX 
Día XX 
Año XXXX 

Parent Survey 5 
Page 2 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Elija la respuesta que mejor describa su experiencia.  
 
Inútil 
No muy 
útil 
Muy útil 
Bastante 
útil 
 
No lo usé 
1. ¿Qué tan útil fue para usted el 
folleto que recibió al inicio de su 
estancia en PICU? 
  
  
  
  
  
 
 
 
2. 
Denos su opinión respecto a las partes del folleto que le parecieron útiles.  
 
 
 
 
 
3. 
Denos su opinión acerca de las partes del folleto que no le gustaron. 
 
 
  
 
 
4. 
¿Cómo podemos mejorar el folleto? 
 
 
 
 
 
 

Parent Survey 5 
Page 3 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
 
5. Anote cualquier otra pregunta o comentario que tenga respecto al folleto o a su estancia 
en PICU: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 4 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Satisfacción del padre de familia respecto a la atención en la Unidad de Cuidados 
Intensivos Pediátricos (Parent Satisfaction with Care in the Intensive Care Unit ©) 
pFS-ICU (24) 
 
¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
Las siguientes preguntas para USTED abordan aspectos de la admisión actual de su hijo en la 
unidad de cuidados intensivos. Sabemos que ha habido muchos doctores, enfermeros y otro 
personal que ha participado en el cuidado de su hijo. Entendemos que puede haber excepciones, 
pero nos interesa su opinión en general acerca de la calidad de la atención que le estamos 
proporcionando. Estamos conscientes de que probablemente usted y su familia están 
atravesando por un momento muy difícil. Agradecemos que se tome el tiempo de darnos su 
opinión. Le pedimos que se tome un momento para decirnos lo que estamos haciendo bien y lo 
que podemos mejorar en nuestra ICU. Tenga por seguro que todas las respuestas son 
confidenciales. Los médicos y enfermeros que cuidan de su hijo no podrán identificar sus 
respuestas.  
PARTE I: SATISFACCIÓN CON LA ATENCIÓN  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión. Si la pregunta no 
corresponde a la estancia de su hijo, entonces marque “no corresponde” (N/A). 
 
Cómo tratamos a su niño (el/la paciente): 
1. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión 
que se le dio a su niño [el/la paciente]) 
 
Manejo de síntomas (qué tan bien evaluó y trató el personal de la ICU los síntomas de su niño): 
2.  Dolor 
3. Dificultad al respirar 
 
4. Inquietud 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
 Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 5 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
¿Cómo lo tratamos a usted? 
 
5. Tomar en cuenta sus necesidades (qué tan bien mostró interés el personal de la ICU en las 
necesidades de usted): 
 
 
6. Apoyo emocional (qué tan bien le proporcionó apoyo emocional el personal de la ICU): 
 
 
7. Coordinación del cuidado (el trabajo de equipo de todo el personal de la ICU que cuidó a su niño): 
 
 
8. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que le 
fueron proporcionados a usted): 
 
ENFERMERAS 
 
9. Destreza y capacidad de las enfermeras de la ICU (qué tan bien cuidan las enfermeras a su niño): 
 
 
10. Frecuencia de comunicación con las enfermeras de la ICU (qué tan frecuentemente se 
comunicaron con usted las enfermeras de la ICU en relación con la condición de su niño): 
 
 
MÉDICOS (todos los médicos, incluyendo residentes e internos) 
 
11. Destreza y capacidad de los médicos de la ICU (qué tan bien cuidaron los médicos a su niño): 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 6 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
LA ICU 
12. ¿Cómo fue el ambiente de la ICU? 
 
LA SALA DE ESPERA 
 
13. ¿Cómo fue el ambiente en la sala de espera de la ICU? 
 
14. A algunas personas les gusta que se haga todo en relación con sus problemas de salud, 
mientras que a otras no les gusta que se haga mucho.  ¿Qué tan satisfecho estuvo usted con el 
nivel o cantidad de cuidados de la salud que recibió su niño en la ICU? 
 
 
muy insatisfecho    
 
un poco insatisfecho    
 
generalmente satisfecho 
 
muy satisfecho    
 
completamente satisfecho 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 7 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
PARTE 2: SATISFACCIÓN DEL PADRE O MADRE DE FAMILIA, PERSONA A CARGO DEL 
PACIENTE O TUTOR CON LA TOMA DE DECISIONES RESPECTO A LA ATENCIÓN QUE 
RECIBEN LOS PACIENTES EN ESTADO CRÍTICO 
Esta parte del cuestionario está diseñada para medir cómo se siente sobre SU participación en las 
decisiones relacionadas con la atención médica de su hijo. En la Unidad de Cuidados Intensivos (ICU), su 
hijo fue atendido por diferentes personas. Queremos que al contestar estas preguntas piense en toda la 
atención que ha recibido su hijo.  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión.   
NECESIDADES DE INFORMACIÓN 
 
15. Frecuencia de la comunicación con los médicos de la ICU (qué tan frecuentemente se 
comunicaron con usted los médicos de la ICU en relación con la condición de su niño): 
16. Facilidad para obtener información (buena disposición del personal de la ICU para responder a sus 
preguntas): 
 
 
17. Comprensión de la información (qué tan bien le proporcionó el personal de la ICU explicaciones que 
usted comprendió): 
 
18. Honestidad de la información (la honestidad de la información que le fue proporcionada a usted 
respecto de la condición de su niño): 
19. Totalidad/Integridad de la información (qué tan bien le informo a usted el personal de la ICU sobre 
lo que estaba sucediendo con su niño y la razón por la que se estaban haciendo las cosas): 
20. Consistencia de la información (la consistencia de la información que le fue proporcionada a usted 
respecto a la condición de su niño – obtuvo usted información similar por parte del médico, enfermera, 
etc.): 
 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
   
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 8 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 ¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
PROCESO DE TOMA DE DECISIONES 
 
Durante la estancia de su niño en la ICU, se toman muchas decisiones importantes respecto del cuidado 
de la salud que él o ella recibe.  En las siguientes preguntas, elija una respuesta del siguiente grupo de 
ideas que mejor se ajuste a sus puntos de vista:  
21. ¿Se sintió usted incluido en el proceso de toma de decisiones? 
 Me sentí muy excluido 
 Me sentí un poco excluido 
 No me sentí ni incluido ni excluido en el proceso de toma de decisiones 
 Me sentí un poco incluido 
 Me sentí muy incluido 
 
22. ¿Se sintió usted apoyado durante el proceso de toma de decisiones? 
  Me sentí totalmente agobiado 
 Me sentí un poco agobiado 
 No me sentí ni agobiado ni apoyado 
 Me sentí apoyado 
 Me sentí muy apoyado  
 
23. ¿Sintió usted que tenía control sobre el cuidado de su niño? 
 Realmente sentí que no tenía control y que el sistema de cuidados de la salud asumió el 
control y ordenó el cuidado que mi niño recibió 
 Sentí un poco que no tenía control y que el sistema de cuidados de la salud asumió el 
control y ordenó el cuidado que mi niño recibió 
 No sentí que no tuviera control ni que tuviera control 
 Sentí que tenía algo de control sobre el cuidado que mi niño recibió 
 Sentí que tenía buen control sobre el cuidado que mi niño recibió 
 
24. Al tomar decisiones, ¿tuvo usted el tiempo suficiente para tratar sus inquietudes y que le 
respondieran sus preguntas? 
 Podría haber utilizado más tiempo 
 Tuve el tiempo suficiente 
 
 
 

Parent Survey 5 
Page 9 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
25. Cuál de las siguientes opciones describe mejor su opinión: 
 Siento que la vida de mi hijo se prolongó de manera innecesaria. 
  Siento que la vida de mi hijo se prolongó un poco más de lo necesario. 
 Siento que la vida de mi hijo no se prolongó ni acortó de manera innecesaria. 
 Siento que la vida de mi hijo se acortó un poco de manera innecesaria. 
 Siento que la vida de mi hijo se acortó de manera innecesaria. 
 
26. Durante las últimas horas en la vida de su hijo, ¿cuál de las siguientes describe 
mejor su opinión?: 
 Siento que él o ella estuvo muy incómodo 
  
 Siento que él o ella estuvo un poco incómodo 
 Siento que él o ella estuvo en su mayoría cómodo 
 Siento que él o ella estuvo muy cómodo 
 Siento que él o ella estuvo completamente cómodo 
 
27. Durante las últimas horas en la vida de su hijo, ¿cuál de las siguientes describe 
mejor su opinión?: 
 
 Me sentí muy abandonado por el equipo de profesionales de la salud 
 Me sentí abandonado por el equipo de profesionales de la salud 
 No me sentí abandonado ni apoyado por el equipo de profesionales de la salud 
 Me sentí apoyado por el equipo de profesionales de la salud 
 Me sentí muy apoyado por el equipo de profesionales de la salud 

Parent Survey 5 
Page 10 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Las siguientes preguntas están relacionadas a la colaboración del equipo en las decisiones tomadas respecto 
a su hijo. 
Encierre en un círculo el número que mejor represente su opinión respecto al proceso del equipo. 
 
1. 
Los miembros del equipo planearon en conjunto tomar las decisiones respecto a la 
 
atención de su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                            
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
 
 
 
 
 
 
     
2. 
Los miembros del equipo tuvieron una comunicación abierta entre ellos al tomar las 
 
decisiones para su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                             
        
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
3. 
La responsabilidad de la toma de decisiones para su hijo se compartió entre los miembros del 
equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                     
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
   
 de acuerdo 
 
4. 
Los miembros del equipo colaboraron juntos en la toma de decisiones. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
5. 
 En el proceso de la toma de decisiones, se tomaron en cuenta las inquietudes de todos los 
 
miembros del equipo respecto a las necesidades de hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
6. 
La toma de decisiones para su hijo se coordinó entre los miembros del equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
7. 
¿Qué tanto colaboraron los miembros del equipo en la toma de decisiones para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
        No colaboraron                                                       
      
 
 
 
   
Colaboraron  
 
 
 
 
 
 
 
 
 
 
 
 
 
completamente 
8. 
¿Qué tan satisfecho está usted con la forma en que se tomaron las decisiones para su hijo? 
 
Esto se refiere al proceso de toma de decisiones, no necesariamente a las decisiones mismas. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
       Nada satisfecho  
                                                                
     
 
   
 Muy satisfecho 
 
9. 
¿Qué tan satisfecho estuvo usted con las decisiones que se tomaron para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
       Nada satisfecho                                                                
 
 
  
     
Muy satisfecho 
 
 

Parent Survey 5 
Page 11 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Las siguientes preguntas tratan acerca de la toma de decisiones en PICU. 
 
1. Describa la decisión MÁS IMPORTANTE que tomó para su hijo mientras se encontraba en PICU: 
 
 
 
Para contestar las siguientes preguntas, piense en la decisión que acaba de anotar.   
Después, marque con una “X”, sólo UNA casilla por fila que mejor describa sus sentimientos 
actuales respecto a esta decisión. 
 
Completa- 
mente de 
acuerdo 
De 
acuerdo 
Ni de 
acuerdo ni 
en 
desacuerdo 
En 
desacuerdo 
Completa-
mente en 
desacuerdo 
3. Fue la decisión correcta 
  
  
  
  
  
4. Me arrepiento de la 
decisión que se tomó 
  
  
  
  
  
5. Si tuviera que volver a 
hacerlo, tomaría la misma 
decisión 
  
  
  
  
  
6. La decisión lastimó 
mucho a mi hijo(a) 
  
  
  
  
  
7. La decisión fue muy sabia 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 12 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
En los últimos 7 días... 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Senti que no valia nada 
  
  
  
  
  
2. Me senti indefenso/a (que no 
podia hacer nada para 
ayudarme) 
  
  
  
  
  
3. Me sentí deprimido/a 
  
  
  
  
  
4. Me sentí desesperanzado/a 
  
  
  
  
  
5. Me sentí fracasado/a 
  
  
  
  
  
6. Me sentí descontento/a 
  
  
  
  
  
7. Sentí que nada me ilusionaba 
  
  
  
  
  
8. Sentí que nada me podía 
animar 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 
 

Parent Survey 5 
Page 13 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
 
 En los últimos 7 días...  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
1. Sentí miedo 
  
  
  
  
  
2. Tuve dificultad para concentrarme 
en otra cosa que no fuera mi 
ansiedad 
  
  
  
  
  
3. Mis inquietudes fueron demasiado 
para mi 
  
  
  
  
  
4. Me sentí intranquilo/a 
  
  
  
  
  
5. Me sentí nervioso/a 
  
  
  
  
  
6. Sentí que necesitaba ayuda para 
controlar mi ansiedad. 
  
  
  
  
  
7. Sentí ansiedad 
  
  
  
  
  
8. Me sentí tenso/a 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
 

Parent Survey 5 
Page 14 A 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
  
Mala  
Pasable 
Buena 
Muy 
buena 
Excelente 
1. En general, diría que su salud es 
 
  
  
  
  
2. En general, diría que su calidad de vida 
es 
 
  
  
  
  
3. En general, ¿cómo calificaría su salud 
física? 
 
  
  
  
  
4. En general, ¿cómo calificaría su salud 
mental, incluidos su estado de ánimo y 
su capacidad para pensar? 
 
  
  
  
  
5. En general, ¿cómo calificaría su 
satisfacción con sus actividades 
sociales y sus relaciones con otras 
personas? 
 
  
  
  
  
6. En general, califique en qué medida 
puede realizar sus actividades sociales 
y funciones habituales. (Esto 
comprende las actividades en casa, en 
el trabajo y en el área donde reside, así 
como sus responsabilidades como 
padre o madre, hijo/a, cónyuge, 
empleado/a, amigo/a, etc.) 
 
 
  
  
  
  
 
Para 
nada 
Un poco 
Moderada
-mente 
En su 
mayoría 
Completame-
nte 
 
7. ¿En qué medida puede realizar sus 
actividades físicas diarias, como 
caminar, subir escaleras, cargar las 
compras o mover una silla? 
 
  
  
  
  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
8. ¿Con qué frecuencia le han afectado 
problemas emocionales como sentir 
ansiedad, depresión o irritabilidad ? 
 
  
  
  
  

 
 
Parent Survey 5 
 
 
Continúe en la siguiente página  
 
Page 15 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Ninguno 
Leve 
Moderado 
Intenso 
Muy 
intenso 
9. En promedio, ¿cómo calificaría su 
cansancio? 
  
  
  
  
  
 
 
 
 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. En promedio, ¿cómo 
calificaría su dolor ? 
                      
 
Ning
ún 
dolor  
 
 
 
 
 
 
 
 
 
 
El peor 
dolor 
imaginable  
 

 
 
Parent Survey 5 
 
Page 16 A 
 
Version Date:  
Participant ID: 
A continuación se encuentra una lista dificultades que en ocasiones presentan algunas personas después de 
un suceso estresante en su vida. Lea cada declaración y después indique que tan estresante ha sido para 
usted cada dificultad presentada durante los últimos 7 días, con respecto a la hospitalización de su hijo en 
PICU.  
¿Qué tanto le estresaron o molestaron estas dificultades? 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
1. Todo lo que le trajo recuerdos 
y le hizo revivir sus 
sentimientos. 
  
  
  
  
  
2. Tuve dificultades para 
mantenerme dormido. 
 
  
  
  
  
  
3. Otras cosas me lo recordaban 
constantemente. 
  
  
  
  
  
4. Me sentí irritable y enojado. 
  
  
  
  
  
5. Evitaba molestarme cuando 
pensaba en ello o algo me lo 
recordaba. 
  
  
  
  
  
6. Pensaba en ello sin quererlo. 
  
  
  
  
  
7. Sentí como si no hubiera 
pasado o no hubiera sido real. 
  
  
  
  
  
8. Me alejé de lo que me hacía 
recordarlo. 
  
  
  
  
  
9. Imágenes sobre ello me venían 
a la cabeza. 
  
  
  
  
  
10. Estaba nervioso y me 
sorprendía fácilmente. 
  
  
  
  
  
11. Trataba de no pensar en ello. 
  
  
  
  
  
12. Estaba consciente de que 
todavía tenía muchos 
sentimientos, pero no hice 
nada al respecto. 
  
  
  
  
  
13. Estaba insensible a ello. 
  
  
  
  
  
14. Me encontré actuando y 
sintiendo que estaba de 
regreso en ese momento. 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 17 A 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
15. Tuve dificultades para 
conciliar el sueño 
  
  
  
  
  
16. Tenía oleadas de sentimientos 
intensos al respecto.  
  
  
  
  
  
17. Trate de eliminarlo de mi 
memoria. 
  
  
  
  
  
18. Tenía dificultades para 
concentrarme. 
  
  
  
  
  
19. Los recordatorios me 
causaron reacciones físicas, 
como sudoración, dificultad 
para respirar, náusea o 
palpitaciones. 
  
  
  
  
  
20. Tenía sueños sobre ello. 
  
  
  
  
  
21. Me sentía vigilante y en 
guardia. 
  
  
  
  
  
22. Trataba de no hablar de ello. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Parent Survey 5 
 
Page 18 A 
 
Version Date:  
Participant ID: 
Marque con una "x" sólo una casilla por fila que mejor describa cómo se siente usted ahora mismo. 
 
Nunca 
En raras 
ocasiones 
Algunas 
veces 
A menudo 
Siempre 
1. Pienso tanto en mi hijo que se me 
dificulta hacer las cosas que hago 
normalmente. 
  
  
  
  
  
2. Los recuerdos de mi hijo me hacen 
sentir mal. 
  
  
  
  
  
3. Siento que no puedo aceptar la 
muerte de mi hijo. 
  
  
  
  
  
4. Anhelo volver a ver o estar con mi 
hijo. 
  
  
  
  
  
5. Me siento atraída a lugares y cosas 
asociadas con mi hijo. 
  
  
  
  
  
6. No puedo evitar sentir enojo por la 
muerte de mi hijo. 
  
  
  
  
  
7. No puedo creer lo que sucedió. 
  
  
  
  
  
8. Me siento pasmado y aturdido con 
lo que sucedió. 
  
  
  
  
  
9. Desde que murió mi hijo, se me 
dificulta confiar en la gente. 
  
  
  
  
  
10. Desde que murió mi hijo, siento que 
perdí la capacidad de interesarme 
por los demás o me siento distante 
de mis seres queridos.  
  
  
  
  
  
11. Siento dolor en el mismo lugar del 
cuerpo o tengo algunos de los 
mismos síntomas que tenía mi hijo. 
  
  
  
  
  
12. Hago todo lo posible por evitar las 
cosas que me recuerdan a mi hijo. 
  
  
  
  
  
13. Siento que la vida no tiene sentido 
sin mi hijo. 
  
  
  
  
  
14. Escucho que mi hijo que se murió 
me habla. 
  
  
  
  
  
15. Veo frente a mí a mi hijo que se 
murió. 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 19 A 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
Nunca 
En raras 
ocasiones 
Algunas 
veces 
A menudo 
Siempre 
16. Siento que es injusto que yo viva 
cuando mi hijo se murió. 
  
  
  
  
  
17. Me siento amargado por la muerte 
de mi hijo. 
  
  
  
  
  
18. Siento envidia de otras personas 
que no han perdido un hijo. 
  
  
  
  
  
19. Desde que se murió mi hijo, me 
siento solo la mayor parte del 
tiempo. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
Gracias por permitirnos aprender más acerca de cómo 
podemos ayudar a los pacientes y sus familias en PICU.  
Envíe esta encuesta en el sobre proporcionado. 
 

 
 
: 
 
 
 
 
 
 
 
Thank you for helping us know more about communication in the 
pediatric intensive care unit (PICU). This survey asks you for 
information about your experience in the PICU, about your 
reactions to the PICU Supports program, and about yourself.  
Please complete this survey and return it in the envelope provided. 
Parent Survey 5 
This survey takes approximately 30-45 minutes to complete 
 
 
Today’s date is:  
 
 
 
Month XX 
Day XX 
Year XXXX 

Parent Survey 5 
Page 2 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
The following questions ask you to rate various aspects of the PICU supports intervention. Please 
select the answer that best reflects your experience.  
 
 
Not at All 
Helpful 
Not Very 
Helpful 
Somewhat 
Helpful 
Extremely 
Helpful 
Unable to 
Assess 
1. How well did PICU Supports help 
with communication in the PICU? 
  
  
  
  
  
 
 
 
During your child’s stay in the PICU, did PICU Supports have a positive impact on: 
 
 
    Yes 
    No 
2. The quality of communication between you 
and the healthcare team?  
  
  
3. The quality of communication within the 
healthcare team (how healthcare team 
members communicated with each other)? 
  
  
4. The timeliness of communication between 
you and the healthcare team? 
  
  
5. Your conversations with the healthcare team 
about your values and preferences for your 
child’s care? 
  
  
6. Your hospital experience? 
  
  
7. The family-centeredness of care delivered? 
  
  
 
 
 
 
 
 
 

Parent Survey 5 
Page 3 B 
Please continue on the next page 
Version Date:  
Participant ID: 
In your view, how useful were the following parts of PICU Supports: 
 
 
Useless 
Not Very 
Useful 
Very 
Useful  
Extremely  
Useful 
Did Not Use 
8. The Navigator’s weekday visits with 
you. 
  
  
  
  
  
9. The communication log kept at your 
child’s bedside. 
  
  
  
  
  
10. The regular family meetings organized 
by the navigator. 
  
  
  
  
  
11. The PICU Handbook that you received. 
  
  
  
  
  
12. The list of questions in the section of 
the PICU Handbook called “What are 
some questions you might want to 
ask?” 
  
  
  
  
  
13. The calendar/diary in the back of the 
PICU Handbook 
  
  
  
  
  
14. Any informational/educational materials 
given to you. 
  
  
  
  
  
 
 
14. Please comment on any parts of PICU Supports that you found useful. 
 
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 4 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
15. Please comment on any parts of PICU Supports that you did not like. 
 
 
 
 
 
 
16. How might we improve PICU Supports? 
 
 
 
 
 
 
17. Please tell us any other questions/comments you have about PICU Supports or being in the PICU? 
 
 

Parent Survey 5 
Page 5 B 
Please continue on the next page 
Version Date:  
Participant ID: 
Parent Satisfaction with Care in the Intensive Care Unit © 
pFS-ICU (24) 
 
How are we doing? 
Your opinions about your child’s ICU stay 
 
The questions that follow ask YOU about your child’s current ICU admission. We understand that 
there have been many doctors and nurses and other staff involved in caring for your child. We know 
that there may be exceptions, but we are interested in your overall assessment of the quality of 
care we are delivering. We understand that this is probably a very difficult time for you and your 
family. We would appreciate you taking the time to provide us with your opinions. Please take a 
moment to tell us what we are doing well and what we can do to make our ICU better. Please be 
assured that all responses are confidential. The doctors and nurses who are looking after your child 
will not be able to identify your response. 
PART I : SATISFACTION WITH CARE  
Please mark an “X” in the ONE box that best describes your feelings. If the question does not apply to 
your child’s stay then please mark “not applicable” (N/A). 
How did we treat your child (the patient)? 
1. Concern and caring by the ICU staff (the courtesy, respect, and compassion your child [the patient] 
was given) 
 
Symptoms management (how well the ICU staff assessed and treated your child’s symptoms): 
2. Pain 
 
3. Breathlessness 
 
4. Agitation 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 6 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
How did we treat you? 
5. Consideration of your needs (how well the ICU staff showed an interest in your needs): 
 
6. Emotional support (how well the ICU staff provided emotional support): 
 
7. Coordination of care (the teamwork of all the ICU staff who took care of your child): 
 
8. Concern and caring by ICU staff (the courtesy, respect, and compassion you were given): 
 
Nurses 
9. Skill and competence of ICU nurses (how well the nurses cared for your child): 
 
10. Frequency of communication with ICU nurses (how often nurses communicated to you about your 
child’s condition): 
 
Physicians (all doctors, including residents and fellows) 
11. Skill and competence of ICU doctors (how well doctors cared for your child): 
 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 7 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
The ICU 
12. Atmosphere of ICU was? 
 
The Waiting Room 
13. The atmosphere in the ICU waiting room was? 
 
14. Some people want everything done for their health problems while others do not want a lot 
done. How satisfied are you with the level or amount of health care your child received in the 
ICU.  
 
 Very dissatisfied 
 Slightly dissatisfied 
 Mostly satisfied 
 Very satisfied 
 Completely satisfied 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 8 B 
Please continue on the next page 
Version Date:  
Participant ID: 
PART 2: PARENT, CAREGIVER, OR GUARDIAN SATISFACTION WITH 
DECISION-MAKING AROUND CARE OF CRITICALLY ILL PATIENTS 
 
This part of the questionnaire is designed to measure how you feel about YOUR involvement in 
decisions related to your child's health care.  In the Intensive Care Unit (ICU), your child may receive 
care from different people.  We would like you to think about all the care your child has received when 
you are answering the questions. 
Please mark an “X” in the ONE box that best describes your feelings.  
 
INFORMATION NEEDS 
 
15. Frequency of communication with ICU doctors (how often doctors communicated to you about your 
child’s condition): 
 
16. Ease of getting information (willingness of ICU staff to answer your questions): 
 
17. Understanding of information (how well ICU staff provided you with explanations that you 
understood): 
 
18. Honesty of information (the honesty of information provided to you about your child’s condition): 
 
19. Completeness of information (how well ICU staff informed you what was happening to your child and 
why things were being done): 
 
20. Consistency of information (the consistency of information provided to you about your child’s 
condition – did you get a similar story from the doctor, nurse, etc.): 
 
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  
Excellent 
Very good 
    Good 
    Fair 
    Poor 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 9 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 How are we doing? 
Your opinions about your child’s ICU stay 
 
PROCESS OF MAKING DECISIONS 
 
During your child’s stay in the ICU, many important decisions are made regarding the health care she 
or he receives. From the following questions, pick one answer from each of the following set of ideas 
that best matches your views: 
 
21. Did you feel included in the decision making process? 
 I felt very excluded 
 I felt somewhat excluded 
 I felt neither included nor excluded from the decision making process 
 I felt somewhat included 
 I felt very included 
 
22. Did you feel supported during the decision making process? 
 I felt totally unsupported 
 I felt slightly unsupported 
 I felt neither supported nor unsupported 
 I felt supported 
 I felt very supported 
 
23. Did you feel you had control over the care of your child? 
 I felt really out of control and that the health care system took over and dictated the care my 
child received 
 I felt somewhat out of control and that the health care system took over and dictated the care 
my child received 
 I felt neither in control nor out of control 
 I felt I had some control over the care my child received 
 I felt that I had good control over the care my child received 
 
24. When making decisions, did you have adequate time to have your concerns addressed and 
questions answered? 
 I could have used more time 
 I had adequate time 
 
 
 
 
 

Parent Survey 5 
Page 10 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
25. Which of the following best describes your views? 
 I felt my child’s life was prolonged unnecessarily 
 I felt my child’s life was slightly prolonged unnecessarily 
 I felt my child’s life was neither prolonged nor shortened unnecessarily 
 I felt my child’s life was slightly shortened unnecessarily 
 I felt my child’s life was shortened unnecessarily 
 
26. During the final hours of your child’s life, which of the following best describes 
your views: 
 I felt that he/she was very uncomfortable 
 I felt that he/she was slightly uncomfortable 
 I felt that he/she was mostly comfortable 
 I felt that he/she was very comfortable 
 I felt that he/she was totally comfortable 
 
27. During the last few hours before your child’s death, which of the following best 
describes your views: 
 I felt very abandoned by the health care team 
 I felt abandoned by the health care team 
 I felt neither abandoned nor supported by the health care team 
 I felt supported by the health care team 
 I felt very supported by the health care team 
 

Parent Survey 5 
Page 11 B 
Please continue on the next page 
Version Date:  
Participant ID: 
The following questions are related to team collaboration during decision making for your child. 
Please circle the number that best represents your judgment about the team process. 
 
 
1. Team members planned together to make decisions about care for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
 
 
 
 
 
 
     
2. Open communication between team members took place as decisions were made for your child. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
3. Decision-making responsibilities for your child were shared among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
4. Team members cooperated in making decisions. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
5. In making decisions, all team members’ concerns about your child’s need were considered. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
6. Decision-making for your child was coordinated among team members. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
 Strongly Disagree 
 
 
                                                                
        Strongly Agree 
 
7. How much collaboration among team members occurred in making decisions for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 No   
                                                         
      
 
 
 
 
 
Complete 
 
 Collaboration  
                                                                      
 
 
 
Collaboration 
 
 
8. How satisfied are you with the way decisions were made for your child? That is with the 
decision-making process, not necessarily with the decision itself. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
    
 Not Satisfied 
 
                                                                
     
 
         Very Satisfied 
 
9. How satisfied were you with decisions made for your child? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied 
                                                               
 
  
 
         Very Satisfied 
 
 
 
©J. Baggs, 1992 
 
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 12 B 
 
Version Date:  
Participant ID: 
 
The following questions are about decision making in the PICU. 
1. Please write down the MOST important decision made for your child while he/she was 
in the PICU. 
 
 
For the following questions, please think about the decision you have identified above.  
Then, please mark an “X” in ONE box per row that best describes your feelings now 
about this decision. 
 
Strongly 
Agree 
Agree 
Neither 
Agree 
Nor 
Disagree 
Disagree 
Strongly 
Disagree 
2. It was the right decision. 
  
  
  
  
  
3. I regret the choice that was 
made. 
  
  
  
  
  
4. I would go for the same choice 
if I had to do it over again. 
  
  
  
  
  
5. The choice did my child a lot 
of harm. 
  
  
  
  
  
6. The decision was a wise one. 
  
  
  
  
  
 
 
 
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 13 B 
 
Version Date:  
Participant ID: 
 
Please respond to each statement by marking and “X” in one box per row. 
 
In the past 7 days...   
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt worthless. 
  
  
  
  
  
2. I felt helpless. 
  
  
  
  
  
3. I felt depressed. 
  
  
  
  
  
4. I felt hopeless. 
  
  
  
  
  
5. I felt like a failure. 
  
  
  
  
  
6. I felt unhappy. 
  
  
  
  
  
7. I felt that I had nothing to look 
forward to. 
  
  
  
  
  
8. I felt that nothing could cheer me 
up. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 14 B 
 
Version Date:  
Participant ID: 
 
Please respond to each statement by marking and “X” in one box per row. 
 
In the past 7 days… 
 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I felt fearful. 
  
  
  
  
  
2. I found it hard to focus on 
anything other than my 
anxiety. 
  
  
  
  
  
3. My worries overwhelmed me. 
  
  
  
  
  
4. I felt uneasy. 
  
  
  
  
  
5. I felt nervous. 
  
  
  
  
  
6. I felt like I needed help for my 
anxiety. 
  
  
  
  
  
7. I felt anxious. 
  
  
  
  
  
8. I felt tense. 
  
  
  
  
  
 
 
 
 
 Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group  
 

 
 
Parent Survey 5 
 
Please continue on the next page  
 
Page 15 B 
 
Version Date:  
Participant ID: 
 
 
 
Please respond to each statement by marking an “X” in one box per row. 
 
 
  
Poor  
Fair 
Good 
Very 
Good 
Excellent 
1. In general, would you say your 
health is: 
  
  
  
  
  
2. In general, would you say your 
quality of life is: 
  
  
  
  
  
3. In general, how would you rate 
your physical health? 
  
  
  
  
  
4. In general, how would you rate 
your mental health, including your 
mood and your ability to think? 
  
  
  
  
  
5. In general, how would you rate you 
satisfaction with your social 
activities and relationships? 
  
  
  
  
  
6. In general, how would you rate 
how well you carry out your usual 
social activities and roles? (This 
includes activities at home, at 
work, and in your community, and 
responsibilities as a parent, child, 
spouse, employee, friend, etc.) 
  
  
  
  
  
 
 
 
 
 
 
 
Not at all  
A little  
Moderately 
Mostly 
Completely 
7. To what extent are you able to 
carry out your everyday physical 
activities such as walking, 
climbing stairs, carrying groceries, 
or moving a chair? 
  
  
  
  
  
 
 
 
 
 
 
 
Never 
 
Rarely 
 
Sometimes 
 
Often 
 
Always 
 
8. How often have you been bothered 
by emotional problems such as 
feeling anxious, depressed, or 
irritable? 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 16 B 
 
Version Date:  
Participant ID: 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. How would you rate your 
pain on average? 
                      
 
No 
Pain 
 
 
 
 
 
 
 
 
 
 
 Worst     
imaginable    
  pain 
 
 
 
 
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 
 
None 
Mild 
Moderately 
Severe 
 
Very 
Severe 
 
9. How would you rate your 
fatigue on average?  
  
  
  
  
  
 
 
 
 
 
 

Parent Survey 5 
Page 17 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 
Below is a list of difficulties people sometimes have after stressful life events.  Please read each item 
and then indicate how distressing each difficulty has been for you during the past 7 days with 
respect to your child being in the PICU.  
How much were you distressed or bothered by these difficulties? 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
1. Any reminder brought back 
feelings about it. 
  
  
  
  
  
2. I had trouble staying asleep. 
  
  
  
  
  
3. Other things kept making me think 
about it. 
  
  
  
  
  
4. I felt irritable and angry. 
  
  
  
  
  
5. I avoided letting myself get upset 
when I thought about it or was 
reminded of it. 
  
  
  
  
  
6. I thought about it when I didn't 
mean to. 
  
  
  
  
  
7. I felt as if it hadn't happened or 
wasn't real. 
  
  
  
  
  
8. I stayed away from reminders of it. 
  
  
  
  
  
9. Pictures about it popped into my 
head. 
  
  
  
  
  
10. I was jumpy and easily startled. 
  
  
  
  
  
11. I tried not to think about it. 
  
  
  
  
  
12. I was aware that I still had a lot of 
feelings about it, but I didn't deal 
with them. 
  
  
  
  
  
13. My feelings about it were kind of 
numb. 
  
  
  
  
  
14. I found myself acting or feeling 
like I was back at that time. 
  
  
  
  
  

Parent Survey 5 
Page 18 B 
Please continue on the next page 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
15. I had trouble falling asleep. 
  
  
  
  
  
16. I had waves of strong feelings 
about it.  
  
  
  
  
  
17. I tried to remove it from my 
memory. 
  
  
  
  
  
18. I had trouble concentrating. 
  
  
  
  
  
19. Reminders of it caused me to have 
physical reactions, such as 
sweating, trouble breathing, 
nausea, or a pounding heart. 
  
  
  
  
  
20. I had dreams about it. 
  
  
  
  
  
21. I felt watchful and on-guard. 
  
  
  
  
  
22. I tried not to talk about it. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 19 B 
Please continue on the next page 
Version Date:  
Participant ID: 
Please mark and “x” in one box per row which best describes how you feel right now. 
 
Never 
Rarely 
Sometimes 
Often 
Always 
1. I think about my child so much that 
it's hard for me to do things I 
normally do. 
  
  
  
  
  
2. Memories of my child upset me. 
  
  
  
  
  
3. I feel I cannot accept the death of my 
child. 
  
  
  
  
  
4. I feel myself longing for my child. 
  
  
  
  
  
5. I feel drawn to places and things 
associated with my child. 
  
  
  
  
  
6. I can't help feeling angry about my 
child's death. 
  
  
  
  
  
7. I feel disbelief over what happened. 
  
  
  
  
  
8. I feel stunned or dazed over what 
happened. 
  
  
  
  
  
9. Ever since he/she died it is hard for 
me to trust people. 
  
  
  
  
  
10. Ever since s/he died I feel like I have 
lost the ability to care about other 
people or I feel distant from people I 
care about. 
  
  
  
  
  
11. I have pain in the same area of my 
body or have some of the same 
symptoms as my child had. 
  
  
  
  
  
12. I go out of my way to avoid 
reminders of my child. 
  
  
  
  
  
13. I feel that life is empty without my 
child. 
  
  
  
  
  
14. I hear the voice of my child who died 
speak to me. 
  
  
  
  
  
15. I see my child who died stand before 
me. 
  
  
  
  
  

Parent Survey 5 
Page 20 B 
 
Version Date:  
Participant ID: 
 
Never 
Rarely 
Sometimes 
Often 
Always 
16. I feel that it is unfair that I should 
live when my child died. 
  
  
  
  
  
17. I feel bitter over my child's death. 
  
  
  
  
  
18. I feel envious of others who have 
not lost their child. 
  
  
  
  
  
19. I feel lonely a great deal of time 
ever since s/he died. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
Thank you very much for helping us know more about how to 
help the patients and families in the PICU.  
Please return this survey in the envelope provided. 
 

 
 
: 
 
 
 
 
 
 
 
Agradecemos su ayuda para aprender más acerca de la 
comunicación en la Unidad de Cuidados Intensivos Pediátricos 
(PICU). Esta encuesta aborda preguntas acerca de su experiencia 
en PICU, sus reacciones respecto al programa PICU Supports y 
acerca de usted. Le pedimos que la conteste y la envíe en el sobre 
proporcionado. 
Encuesta 5 para el padre o la madre de familia  
La encuesta toma aproximadamente de 30 a 45 minutos en contestarse 
 
 
Fecha de hoy:  
 
 
 
Mes XX 
Día XX 
Año XXXX 

Parent Survey 5 
Page 2B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Las siguientes preguntas le piden calificar varios aspectos del programa PICU Supports. Elija 
la respuesta que mejor describa su experiencia.  
 
 
No fue útil 
en lo 
absoluto 
No fue 
muy útil 
Fue un 
poco útil 
Increíble
mente útil 
No lo 
puedo 
evaluar 
1. ¿Qué tan útil fue PICU Supports 
respecto a la comunicación en la 
unidad? 
  
  
  
  
  
 
 
Durante la estancia de su hijo en PICU, el programa PICU Supports tuvo in 
impacto positivo en: 
 
 
Sí 
No 
2. La calidad de la comunicación entre usted y 
el equipo médico 
  
  
3. La calidad de la comunicación entre el 
equipo médico (cómo se comunican los 
miembros entre ellos) 
  
  
4. La calidad de la comunicación entre usted y 
el equipo médico 
 
  
  
5. Sus conversaciones con el equipo médico 
acerca de los valores y preferencias respecto 
a la atención médica de su hijo. 
  
  
6. Su experiencia en el hospital 
  
  
7. La posición de la familia respecto a la 
atención recibida (la atención debe centrarse 
en la familia) 
  
  
 
 
 
 
 

Parent Survey 5 
Page 3B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Desde su punto de vista, ¿qué tan útiles fueron las siguientes partes de PICU Supports?: 
 
Inútil 
No muy 
útil 
Muy 
útil 
 
Extremadamente 
útil 
 
No lo 
utilicé 
8. Las visitas del Navegador durante la 
semana 
  
  
  
  
  
9. El diario de comunicación en la 
habitación de su hijo. 
  
  
  
  
  
10. Las reuniones familiares que 
coordinó regularmente el navegador. 
  
  
  
  
  
11. El Manual de PICU que usted 
recibió. 
  
  
  
  
  
12. La lista de preguntas en la sección 
del Manual de PICU, llamada 
“¿Cuáles son algunas preguntas que 
le gustaría hacer?” 
 
  
  
  
  
  
13. El calendario o diario al final del 
Manual PICU. 
  
  
  
  
  
14. Todo material informativo o 
educativo que se le entregó. 
  
  
  
  
  
 
 
15. Haga un comentario acerca de las partes de PICU Support que le parecieron útiles.  
 
 
 
 
 
 
 

Parent Survey 5 
Page 4B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
16. Haga un comentario acerca de las partes de PICU Support que no le gustaron.  
 
 
 
 
 
17. ¿Cómo podríamos mejorar PICU Supports? 
 
 
 
 
 
18. Tienen alguna otra pregunta o comentario? 

Parent Survey 5 
Page 5B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Satisfacción del padre de familia respecto a la atención en la Unidad de Cuidados 
Intensivos Pediátricos (Parent Satisfaction with Care in the Intensive Care Unit ©) 
pFS-ICU (24) 
 
¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
Las siguientes preguntas para USTED abordan aspectos de la admisión actual de su hijo en la 
unidad de cuidados intensivos. Sabemos que ha habido muchos doctores, enfermeros y otro 
personal que ha participado en el cuidado de su hijo. Entendemos que puede haber excepciones, 
pero nos interesa su opinión en general acerca de la calidad de la atención que le estamos 
proporcionando. Estamos conscientes de que probablemente usted y su familia están 
atravesando por un momento muy difícil. Agradecemos que se tome el tiempo de darnos su 
opinión. Le pedimos que se tome un momento para decirnos lo que estamos haciendo bien y lo 
que podemos mejorar en nuestra ICU. Tenga por seguro que todas las respuestas son 
confidenciales. Los médicos y enfermeros que cuidan de su hijo no podrán identificar sus 
respuestas.  
PARTE I: SATISFACCIÓN CON LA ATENCIÓN  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión. Si la pregunta no 
corresponde a la estancia de su hijo, entonces marque “no corresponde” (N/A). 
 
Cómo tratamos a su niño (el/la paciente): 
1. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión 
que se le dio a su niño [el/la paciente]) 
 
Manejo de síntomas (qué tan bien evaluó y trató el personal de la ICU los síntomas de su niño): 
2.  Dolor 
3. Dificultad al respirar 
 
4. Inquietud 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
 Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 6B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
¿Cómo lo tratamos a usted? 
 
5. Tomar en cuenta sus necesidades (qué tan bien mostró interés el personal de la ICU en las 
necesidades de usted): 
 
 
6. Apoyo emocional (qué tan bien le proporcionó apoyo emocional el personal de la ICU): 
 
 
7. Coordinación del cuidado (el trabajo de equipo de todo el personal de la ICU que cuidó a su niño): 
 
 
8. Preocupación y cuidado por parte del personal de la ICU (la cortesía, respeto y compasión que le 
fueron proporcionados a usted): 
 
ENFERMERAS 
 
9. Destreza y capacidad de las enfermeras de la ICU (qué tan bien cuidan las enfermeras a su niño): 
 
 
10. Frecuencia de comunicación con las enfermeras de la ICU (qué tan frecuentemente se 
comunicaron con usted las enfermeras de la ICU en relación con la condición de su niño): 
 
 
MÉDICOS (todos los médicos, incluyendo residentes e internos) 
 
11. Destreza y capacidad de los médicos de la ICU (qué tan bien cuidaron los médicos a su niño): 
 
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
 
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 7B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
LA ICU 
12. ¿Cómo fue el ambiente de la ICU? 
 
LA SALA DE ESPERA 
 
13. ¿Cómo fue el ambiente en la sala de espera de la ICU? 
 
14. A algunas personas les gusta que se haga todo en relación con sus problemas de salud, 
mientras que a otras no les gusta que se haga mucho.  ¿Qué tan satisfecho estuvo usted con el 
nivel o cantidad de cuidados de la salud que recibió su niño en la ICU? 
 
 
muy insatisfecho    
 
un poco insatisfecho    
 
generalmente satisfecho 
 
muy satisfecho    
 
completamente satisfecho 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 8B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
PARTE 2: SATISFACCIÓN DEL PADRE O MADRE DE FAMILIA, PERSONA A CARGO DEL 
PACIENTE O TUTOR CON LA TOMA DE DECISIONES RESPECTO A LA ATENCIÓN QUE 
RECIBEN LOS PACIENTES EN ESTADO CRÍTICO 
Esta parte del cuestionario está diseñada para medir cómo se siente sobre SU participación en las 
decisiones relacionadas con la atención médica de su hijo. En la Unidad de Cuidados Intensivos (ICU), su 
hijo fue atendido por diferentes personas. Queremos que al contestar estas preguntas piense en toda la 
atención que ha recibido su hijo.  
Marque con una “X” sólo UNA de las casillas que mejor describa su opinión.   
NECESIDADES DE INFORMACIÓN 
 
15. Frecuencia de la comunicación con los médicos de la ICU (qué tan frecuentemente se 
comunicaron con usted los médicos de la ICU en relación con la condición de su niño): 
16. Facilidad para obtener información (buena disposición del personal de la ICU para responder a sus 
preguntas): 
 
 
17. Comprensión de la información (qué tan bien le proporcionó el personal de la ICU explicaciones que 
usted comprendió): 
 
18. Honestidad de la información (la honestidad de la información que le fue proporcionada a usted 
respecto de la condición de su niño): 
19. Totalidad/Integridad de la información (qué tan bien le informo a usted el personal de la ICU sobre 
lo que estaba sucediendo con su niño y la razón por la que se estaban haciendo las cosas): 
20. Consistencia de la información (la consistencia de la información que le fue proporcionada a usted 
respecto a la condición de su niño – obtuvo usted información similar por parte del médico, enfermera, 
etc.): 
 
 
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
     
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
    
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  
   
Excelente 
     Muy bien 
     Bien 
     Aceptable 
    Mal 
    N/A 
  
  
  
  
  
  

Parent Survey 5 
Page 9B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 ¿Cómo estamos trabajando? 
Su opinión acerca de la estancia de su hijo en la Unidad de Cuidados Intensivos 
 
PROCESO DE TOMA DE DECISIONES 
 
Durante la estancia de su niño en la ICU, se toman muchas decisiones importantes respecto del cuidado 
de la salud que él o ella recibe.  En las siguientes preguntas, elija una respuesta del siguiente grupo de 
ideas que mejor se ajuste a sus puntos de vista:  
21. ¿Se sintió usted incluido en el proceso de toma de decisiones? 
 Me sentí muy excluido 
 Me sentí un poco excluido 
 No me sentí ni incluido ni excluido en el proceso de toma de decisiones 
 Me sentí un poco incluido 
 Me sentí muy incluido 
 
22. ¿Se sintió usted apoyado durante el proceso de toma de decisiones? 
  Me sentí totalmente agobiado 
 Me sentí un poco agobiado 
 No me sentí ni agobiado ni apoyado 
 Me sentí apoyado 
 Me sentí muy apoyado  
 
23. ¿Sintió usted que tenía control sobre el cuidado de su niño? 
 Realmente sentí que no tenía control y que el sistema de cuidados de la salud asumió el 
control y ordenó el cuidado que mi niño recibió 
 Sentí un poco que no tenía control y que el sistema de cuidados de la salud asumió el 
control y ordenó el cuidado que mi niño recibió 
 No sentí que no tuviera control ni que tuviera control 
 Sentí que tenía algo de control sobre el cuidado que mi niño recibió 
 Sentí que tenía buen control sobre el cuidado que mi niño recibió 
 
24. Al tomar decisiones, ¿tuvo usted el tiempo suficiente para tratar sus inquietudes y que le 
respondieran sus preguntas? 
 Podría haber utilizado más tiempo 
 Tuve el tiempo suficiente 
 
 
 

Parent Survey 5 
Page 10B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
25. Cuál de las siguientes opciones describe mejor su opinión: 
 Siento que la vida de mi hijo se prolongó de manera innecesaria. 
  Siento que la vida de mi hijo se prolongó un poco más de lo necesario. 
 Siento que la vida de mi hijo no se prolongó ni acortó de manera innecesaria. 
 Siento que la vida de mi hijo se acortó un poco de manera innecesaria. 
 Siento que la vida de mi hijo se acortó de manera innecesaria. 
 
26. Durante las últimas horas en la vida de su hijo, ¿cuál de las siguientes describe 
mejor su opinión?: 
 Siento que él o ella estuvo muy incómodo 
  
 Siento que él o ella estuvo un poco incómodo 
 Siento que él o ella estuvo en su mayoría cómodo 
 Siento que él o ella estuvo muy cómodo 
 Siento que él o ella estuvo completamente cómodo 
 
27. Durante las últimas horas en la vida de su hijo, ¿cuál de las siguientes describe 
mejor su opinión?: 
 
 Me sentí muy abandonado por el equipo de profesionales de la salud 
 Me sentí abandonado por el equipo de profesionales de la salud 
 No me sentí abandonado ni apoyado por el equipo de profesionales de la salud 
 Me sentí apoyado por el equipo de profesionales de la salud 
 Me sentí muy apoyado por el equipo de profesionales de la salud 

Parent Survey 5 
Page 11B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Las siguientes preguntas están relacionadas a la colaboración del equipo en las decisiones tomadas respecto 
a su hijo. 
Encierre en un círculo el número que mejor represente su opinión respecto al proceso del equipo. 
 
1. 
Los miembros del equipo planearon en conjunto tomar las decisiones respecto a la 
 
atención de su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                            
 
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
 
 
 
 
 
 
     
2. 
Los miembros del equipo tuvieron una comunicación abierta entre ellos al tomar las 
 
decisiones para su hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                             
        
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
3. 
La responsabilidad de la toma de decisiones para su hijo se compartió entre los miembros del 
equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                     
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
   
 de acuerdo 
 
4. 
Los miembros del equipo colaboraron juntos en la toma de decisiones. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
5. 
 En el proceso de la toma de decisiones, se tomaron en cuenta las inquietudes de todos los 
 
miembros del equipo respecto a las necesidades de hijo. 
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
6. 
La toma de decisiones para su hijo se coordinó entre los miembros del equipo.  
 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
 
Completamente  
                                                                       
 
 
 
Completamente 
 
en desacuerdo  
 
 
 
 
 
 
 
 
 
de  acuerdo 
 
7. 
¿Qué tanto colaboraron los miembros del equipo en la toma de decisiones para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
        No colaboraron                                                       
      
 
 
 
   
Colaboraron  
 
 
 
 
 
 
 
 
 
 
 
 
 
completamente 
8. 
¿Qué tan satisfecho está usted con la forma en que se tomaron las decisiones para su hijo? 
 
Esto se refiere al proceso de toma de decisiones, no necesariamente a las decisiones mismas. 
 
   
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
       Nada satisfecho  
                                                                
     
 
   
 Muy satisfecho 
 
9. 
¿Qué tan satisfecho estuvo usted con las decisiones que se tomaron para su hijo? 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
       Nada satisfecho                                                                
 
 
  
     
Muy satisfecho 
 
 

Parent Survey 5 
Page 12B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Las siguientes preguntas tratan acerca de la toma de decisiones en PICU. 
 
1. Describa la decisión MÁS IMPORTANTE que tomó para su hijo mientras se encontraba en PICU: 
 
 
 
Para contestar las siguientes preguntas, piense en la decisión que acaba de anotar.   
Después, marque con una “X”, sólo UNA casilla por fila que mejor describa sus sentimientos 
actuales respecto a esta decisión. 
 
Completa- 
mente de 
acuerdo 
De 
acuerdo 
Ni de 
acuerdo ni 
en 
desacuerdo 
En 
desacuerdo 
Completa-
mente en 
desacuerdo 
3. Fue la decisión correcta 
  
  
  
  
  
4. Me arrepiento de la 
decisión que se tomó 
  
  
  
  
  
5. Si tuviera que volver a 
hacerlo, tomaría la misma 
decisión 
  
  
  
  
  
6. La decisión lastimó 
mucho a mi hijo(a) 
  
  
  
  
  
7. La decisión fue muy sabia 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 

Parent Survey 5 
Page 13B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
 
 En los últimos 7 días...  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
1. Sentí miedo 
  
  
  
  
  
2. Tuve dificultad para concentrarme 
en otra cosa que no fuera mi 
ansiedad 
  
  
  
  
  
3. Mis inquietudes fueron demasiado 
para mi 
  
  
  
  
  
4. Me sentí intranquilo/a 
  
  
  
  
  
5. Me sentí nervioso/a 
  
  
  
  
  
6. Sentí que necesitaba ayuda para 
controlar mi ansiedad. 
  
  
  
  
  
7. Sentí ansiedad 
  
  
  
  
  
8. Me sentí tenso/a 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 

Parent Survey 5 
Page 14B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
En los últimos 7 días... 
 
Nunca 
 
Rara 
vez 
Algunas 
veces 
A 
menudo  
Siempre 
 
1. Senti que no valia nada 
  
  
  
  
  
2. Me senti indefenso/a (que no 
podia hacer nada para 
ayudarme) 
  
  
  
  
  
3. Me sentí deprimido/a 
  
  
  
  
  
4. Me sentí desesperanzado/a 
  
  
  
  
  
5. Me sentí fracasado/a 
  
  
  
  
  
6. Me sentí descontento/a 
  
  
  
  
  
7. Sentí que nada me ilusionaba 
  
  
  
  
  
8. Sentí que nada me podía 
animar 
  
  
  
  
  
 
 
Participant Format © 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group 
 
 

Parent Survey 5 
Page 15B 
Continúe en la siguiente página 
Version Date 
Participant ID: 
 
 
Responda a cada afirmación marcando sólo una respuesta ("x") por fila. 
 
  
Mala  
Pasable 
Buena 
Muy 
buena 
Excelente 
1. En general, diría que su salud es 
 
  
  
  
  
2. En general, diría que su calidad de vida 
es 
 
  
  
  
  
3. En general, ¿cómo calificaría su salud 
física? 
 
  
  
  
  
4. En general, ¿cómo calificaría su salud 
mental, incluidos su estado de ánimo y 
su capacidad para pensar? 
 
  
  
  
  
5. En general, ¿cómo calificaría su 
satisfacción con sus actividades 
sociales y sus relaciones con otras 
personas? 
 
  
  
  
  
6. En general, califique en qué medida 
puede realizar sus actividades sociales 
y funciones habituales. (Esto 
comprende las actividades en casa, en 
el trabajo y en el área donde reside, así 
como sus responsabilidades como 
padre o madre, hijo/a, cónyuge, 
empleado/a, amigo/a, etc.) 
 
 
  
  
  
  
 
Para 
nada 
Un poco 
Moderada
-mente 
En su 
mayoría 
Completame-
nte 
 
7. ¿En qué medida puede realizar sus 
actividades físicas diarias, como 
caminar, subir escaleras, cargar las 
compras o mover una silla? 
 
  
  
  
  
 
Nunca 
Rara vez 
Algunas 
veces 
A 
menudo 
Siempre 
8. ¿Con qué frecuencia le han afectado 
problemas emocionales como sentir 
ansiedad, depresión o irritabilidad ? 
 
  
  
  
  

 
 
Parent Survey 5 
 
 
Continúe en la siguiente página  
 
Page 16B 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Ninguno 
Leve 
Moderado 
Intenso 
Muy 
intenso 
9. En promedio, ¿cómo calificaría su 
cansancio? 
  
  
  
  
  
 
 
 
 
 
 
 
0 
1 
2 
3 
4 
5 
6 
7 
8 
9 
  10 
10. En promedio, ¿cómo 
calificaría su dolor ? 
                      
 
Ning
ún 
dolor  
 
 
 
 
 
 
 
 
 
 
El peor 
dolor 
imaginable  
 

 
 
Parent Survey 5 
 
Page 17B 
 
Version Date:  
Participant ID: 
A continuación se encuentra una lista dificultades que en ocasiones presentan algunas personas después de 
un suceso estresante en su vida. Lea cada declaración y después indique que tan estresante ha sido para 
usted cada dificultad presentada durante los últimos 7 días, con respecto a la hospitalización de su hijo en 
PICU.  
¿Qué tanto le estresaron o molestaron estas dificultades? 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
1. Todo lo que le trajo recuerdos 
y le hizo revivir sus 
sentimientos. 
  
  
  
  
  
2. Tuve dificultades para 
mantenerme dormido. 
 
  
  
  
  
  
3. Otras cosas me lo recordaban 
constantemente. 
  
  
  
  
  
4. Me sentí irritable y enojado. 
  
  
  
  
  
5. Evitaba molestarme cuando 
pensaba en ello o algo me lo 
recordaba. 
  
  
  
  
  
6. Pensaba en ello sin quererlo. 
  
  
  
  
  
7. Sentí como si no hubiera 
pasado o no hubiera sido real. 
  
  
  
  
  
8. Me alejé de lo que me hacía 
recordarlo. 
  
  
  
  
  
9. Imágenes sobre ello me venían 
a la cabeza. 
  
  
  
  
  
10. Estaba nervioso y me 
sorprendía fácilmente. 
  
  
  
  
  
11. Trataba de no pensar en ello. 
  
  
  
  
  
12. Estaba consciente de que 
todavía tenía muchos 
sentimientos, pero no hice 
nada al respecto. 
  
  
  
  
  
13. Estaba insensible a ello. 
  
  
  
  
  
14. Me encontré actuando y 
sintiendo que estaba de 
regreso en ese momento. 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 18B 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
 
Para 
nada 
Un poco  
Moderada-
mente 
Bastante 
Demasiado 
15. Tuve dificultades para 
conciliar el sueño 
  
  
  
  
  
16. Tenía oleadas de sentimientos 
intensos al respecto.  
  
  
  
  
  
17. Trate de eliminarlo de mi 
memoria. 
  
  
  
  
  
18. Tenía dificultades para 
concentrarme. 
  
  
  
  
  
19. Los recordatorios me 
causaron reacciones físicas, 
como sudoración, dificultad 
para respirar, náusea o 
palpitaciones. 
  
  
  
  
  
20. Tenía sueños sobre ello. 
  
  
  
  
  
21. Me sentía vigilante y en 
guardia. 
  
  
  
  
  
22. Trataba de no hablar de ello. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Parent Survey 5 
 
Page 19B 
 
Version Date:  
Participant ID: 
Marque con una "x" sólo una casilla por fila que mejor describa cómo se siente usted ahora mismo. 
 
Nunca 
En raras 
ocasiones 
Algunas 
veces 
A menudo 
Siempre 
1. Pienso tanto en mi hijo que se me 
dificulta hacer las cosas que hago 
normalmente. 
  
  
  
  
  
2. Los recuerdos de mi hijo me hacen 
sentir mal. 
  
  
  
  
  
3. Siento que no puedo aceptar la 
muerte de mi hijo. 
  
  
  
  
  
4. Anhelo volver a ver o estar con mi 
hijo. 
  
  
  
  
  
5. Me siento atraída a lugares y cosas 
asociadas con mi hijo. 
  
  
  
  
  
6. No puedo evitar sentir enojo por la 
muerte de mi hijo. 
  
  
  
  
  
7. No puedo creer lo que sucedió. 
  
  
  
  
  
8. Me siento pasmado y aturdido con 
lo que sucedió. 
  
  
  
  
  
9. Desde que murió mi hijo, se me 
dificulta confiar en la gente. 
  
  
  
  
  
10. Desde que murió mi hijo, siento que 
perdí la capacidad de interesarme 
por los demás o me siento distante 
de mis seres queridos.  
  
  
  
  
  
11. Siento dolor en el mismo lugar del 
cuerpo o tengo algunos de los 
mismos síntomas que tenía mi hijo. 
  
  
  
  
  
12. Hago todo lo posible por evitar las 
cosas que me recuerdan a mi hijo. 
  
  
  
  
  
13. Siento que la vida no tiene sentido 
sin mi hijo. 
  
  
  
  
  
14. Escucho que mi hijo que se murió 
me habla. 
  
  
  
  
  
15. Veo frente a mí a mi hijo que se 
murió. 
  
  
  
  
  

 
 
Parent Survey 5 
 
Page 20B 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
 
Nunca 
En raras 
ocasiones 
Algunas 
veces 
A menudo 
Siempre 
16. Siento que es injusto que yo viva 
cuando mi hijo se murió. 
  
  
  
  
  
17. Me siento amargado por la muerte 
de mi hijo. 
  
  
  
  
  
18. Siento envidia de otras personas 
que no han perdido un hijo. 
  
  
  
  
  
19. Desde que se murió mi hijo, me 
siento solo la mayor parte del 
tiempo. 
  
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
Gracias por permitirnos aprender más acerca de cómo 
podemos ayudar a los pacientes y sus familias en PICU.  
Envíe esta encuesta en el sobre proporcionado. 
 

 
 
 
Parent Interview Guide:  
(To be completed at discharge for non-bereaved & 3-5weeks post discharge for bereaved) 
 
1. Goal of interview: Obtain overview of the PICU experience and develop rapport. 
a. I would like to talk with you about your child’s recent PICU stay. Please describe what happened 
during [insert child’s name] recent stay in the PICU? 
 
2. Goal of interview: Obtain information about the positive and negative aspects of communication with 
HTMs during their PICU experience. 
a. Based on your experience, how would you describe communication between you and the 
healthcare team? 
b. Please describe (or give examples about) some of the good aspects of communication between 
you and the healthcare team. (i.e. what seemed to go well in terms of your communicating with 
the healthcare team?) 
c. Please describe (or give examples about) aspects of communication between you and the 
healthcare team that you wished had gone better. (i.e. what did not seem to go well in terms of 
your communication with the healthcare team?) 
 
3. Goal of interview: Obtain information about perceptions of care coordination among HTMs during their 
child’s PICU admission. 
a. Along with the PICU team, which, if any, other specialty teams were involved in your child’s 
care? 
b. How was communication between the PICU team and the other specialty teams involved in your 
child’s care? Please describe or give examples. 
c. How was communication among the people on the PICU team? Please describe or give 
examples. 
d. During your child’s stay in the PICU, what interactions did you have with social workers, 
chaplains, case managers, and/or child-life specialists? 
e. How was communication between the PICU team and social workers, chaplains, case 
managers, and/or child-life specialists that you interacted with? Please describe or give 
examples. 
 
4. Goal of interview: Obtain information about decisions that parents faced during their child’s PICU 
admission. 
a. What kind of decisions did you and the healthcare team make for your child during your child’s 
PICU admission? 
b. How did you learn that those decisions needed to be made? (i.e. how was information about 
such decision presented to you?) 
 
5. Goal of interview: Obtain information about parents’ involvement in decision making during their child’s 
PICU admission. 
a. How involved did you feel about the decisions made for your child during your child’s PICU 
admission?    
b. Would you have liked to be more involved in decisions made about your child during your child’s 
PICU admission?  
c. How could the healthcare team have involved you more?  
 

 
 
6. Goal of interview: Obtain information about perceptions of the emotional support they received during 
their child’s PICU admission 
a. Describe the emotional support you received from the healthcare team during your child’s PICU 
admission.  
b. How did the healthcare team support you emotionally during your child’s PICU admission? 
Please describe or give examples. 
c. How could the healthcare team have provided more emotional support during your child’s PICU 
admission? Please describe or give examples. 
 
7. Goal of interview: Obtain information about the acceptability of having a navigator or receiving an 
education brochure. 
a. What was it like to have a navigator during your child’s PICU admission?  
 
 
Or What was it like to receive an education brochure when your child was admitted to  
 
 
the PICU? 
b. What things about the navigator did you like?  
 
 
Or What things about the brochure did you like? 
c. What things about the navigator did you not like?  
 
 
Or What things about the brochure did you not like? 
d. What was it like to receive the PICU handbook when your child was admitted to the PICU?  Did 
you use the Question Prompt list in the handbook? Or the Calendar/Diary in the back of the 
handbook? What was it like to have the Communication Log? What did you like about these 
tools? What did you not like? 
 
8. Goal of interview: Obtain information about the effectiveness of the navigator or education brochure.  
a. How did the navigator impact your experience in the PICU? Or How did the brochure impact 
your experience in the PICU? 
b. How did the navigator impact communication between you and the healthcare team during your 
child’s PICU admission? Or How did the brochure impact communication between you and the 
healthcare team during your child’s PICU admission? 
c. How did the navigator impact communication among the healthcare team members caring for 
your child? 
 
9. Goal of interview: Obtain information about other topics important to parents 
a. What else you would like to share about your child’s PICU stay that impacted your experience?  
 
 
 
 

 
 
 
[Date] 
 
[Participant]  
[Address] 
[Address] 
 
 
Dear [Participant], 
 
Thank you for participating in the study called, Improving Communication in the Pediatric 
Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate Study. 
 
As a doctor who works in the pediatric intensive care unit (PICU), I see children and their 
families struggling with critical illness all the time. I am committed to finding better ways to 
support families of children in the PICU. Through your involvement in this project, we hope to 
know more about what can be done to help others like you and your family.  
 
As part of this study, we will be contacting you in the future to complete 2 additional surveys. I 
appreciate your continued support of this project.  
 
No one understands better than you the difficulties faced by a family when a child is critically ill. 
Thank you for sharing your experiences with us. Please do contact me if you have any questions 
or other comments about this project.  
 
Thank you for your time and participation   
 
 
Sincerely, 
 
 
 
Kelly Michelson 
Attending Physician/Pediatric Intensive Care Unit 
Ann & Robert H. Lurie Children’s Hospital of Chicago  
Email: kmichelson@luriechildrens.org 
Phone: 312-227-1606 

 
 
 
[Date] 
 
[Participant]  
[Address] 
[Address] 
 
 
Estimado(a) [Participant] 
 
Agradecemos su participación en el estudio titulado: “Mejoramiento del proceso de 
comunicación en la Unidad de Cuidados Intensivos Pediátricos para los pacientes que se 
enfrentan a decisiones que suponen un cambio de vida (Navigate Study)” .  
 
Como médica integrante del equipo que conforma la Unidad de Cuidados Intensivos Pediátricos 
(PICU, Pediatric Intensive Care Unit), con frecuencia soy testigo de todas las dificultades que 
afrontan los niños que padecen enfermedades críticas y sus familias, y estoy comprometida a 
encontrar una mejor forma de apoyar a las familias de los niños hospitalizados en PICU. A través 
de su participación en este proyecto, esperamos aprender más acerca de lo que se puede hacer 
para ayudar a otras personas que se encuentran en situaciones similares a la suya.   
 
Como parte de este estudio, nos comunicaremos con ustedes en el futuro para que contesten otras 
dos encuestas. Agradecemos su apoyo continuo para este proyecto.  
 
Nadie entiende mejor que usted las dificultades que enfrenta una familia cuando un hijo está en 
estado crítico. Agradecemos que nos comparta sus experiencias. Le pido que se comunique 
conmigo si tiene preguntas o comentarios acerca de este proyecto.   
 
Gracias por su tiempo y participación.   
 
 
Atentamente, 
 
 
 
Kelly Michelson 
Médica adjunta de la Unidad de Cuidados Intensivos Pediátricos 
 
Ann & Robert H. Lurie Children’s Hospital of Chicago  
Correo electrónico: kmichelson@luriechildrens.org 
Teléfono: 312-227-1606 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Dear [Potential Participant], 
 
Thank you for your participation in our research project, Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate Study. 
 
The staff at Ann & Robert H. Lurie Children’s Hospital of Chicago is committed to helping 
patients and their families throughout all aspects of illness. Children like [child’s name] remind 
us how fragile health can be. As a doctor who works in the pediatric intensive care unit (PICU), I 
see children struggling with critical illness all the time. Continuing our goal of learning how to 
provide the best support possible to children and their families in the PICU, we would like to 
follow up with you about your experience in the PICU, your views on the research that you 
participated in, and how your are doing after your child’s stay in the PICU. 
 
Enclosed is a survey for you to complete and return to us in the self-addressed stamped envelope 
provided. 
 
If we do not receive this packet back within 2 weeks, our study team will call you to remind you 
to complete the survey. If you do not wish for someone to call you about this, please let us know 
by sending back the attached form in the envelop provided. 
 
If you have any questions please feel free to contact the Study Coordinator, Laura Campbell 
(312-227-1618, lacampbell@luriechildrens.org), or myself, Dr. Kelly Michelson (312-227-1606, 
email kmichelson@luriechildrens.org).  
 
No one understands better than you the difficulties faced by a family when a child is critically ill. 
We hope to learn from your experiences by hearing your story and the stories of other families 
whose children have been admitted to the pediatric intensive care unit. 
 
Thank you for your time and participation   
 
 
Sincerely, 
 
 
 
Kelly Michelson 
Attending Physician/Pediatric Intensive Care Unit 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

 
 
 
 
DECLINE Participation 
 
 
 Please DO NOT call my home about the study called, “Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate 
Study.” 
 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Estimado(a) [Potential Participant]: 
 
Agradecemos su participación en nuestro proyecto de investigación, “Estudio de navegación 
(Navigate Study): Mejoramiento del proceso de comunicación en la Unidad de Cuidado 
Intensivo Pediátrico para los pacientes que se enfrentan a decisiones que suponen un cambio de 
vida”: 
 
El personal del Ann & Robert H. Lurie Children’s Hospital of Chicago se compromete a ayudar 
a los pacientes y sus familias a lo largo de todos los aspectos de la enfermedad. Los niños como 
[child’s name] nos recuerdan lo frágil que puede ser la salud. Como médica integrante del equipo 
que conforma la Unidad de Cuidados Intensivos Pediátricos (PICU, pediatric intensive care 
unit), con frecuencia soy testigo de todas las dificultades que afrontan los niños que padecen 
enfermedades críticas.  Para continuar trabajando por nuestro objetivo, de aprender a 
proporcionar el mejor apoyo posible a los niños y sus familias en PICU, nos gustaría tener 
seguimiento con usted acerca de su experiencia en PICU, su opinión sobre la investigación en la 
que participó y cómo se encuentra después de la estancia de su hijo en PICU. 
 
Adjunta se encuentra una encuesta para que usted la conteste y nos la envíe en el sobre 
estampado que también le proporcionamos. 
 
Si no recibimos el paquete en el transcurso de 2 semanas, nuestro equipo del estudio le 
contactará por teléfono para recordarle contestar la encuesta. Si no desea recibir una llamada 
acerca de este asunto, le pedimos que nos lo haga saber enviando el formulario adjunto en el 
sobre que le proporcionamos. 
 
Si tiene preguntas, no dude en contactar a la coordinadora del estudio, Laura Campbell (312-227-
1618, lacampbell@luriechildrens.org), o a mí, la Dra. Kelly Michelson (312-227-1606, 
kmichelson@luriechildrens.org).  
 
Nadie comprende mejor que usted las dificultades enfrentadas por una familia cuando un hijo se 
encuentra en estado crítico. Esperamos aprender de sus experiencias y las de otras familias cuyos 
hijos han sido internados en la unidad de cuidados intensivos pediátricos. 
 
Le agradecemos su tiempo y su participación.     
 
 
Atentamente, 
 
 
Kelly Michelson 
Médica adjunta de la Unidad de Cuidados Intensivos Pediátricos 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

 
 
RECHAZAR la participación 
 
 
 Por favor NO LLAMEN a mi hogar acerca del“Estudio de navegación (Navigate Study): 
Mejoramiento del proceso de comunicación en la Unidad de Cuidado Intensivo Pediátrico para 
los pacientes que se enfrentan a decisiones que suponen un cambio de vida”. 
 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Dear [Potential Participant], 
 
 
Thank you for your participation in our research project, Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate Study. 
 
The staff at Ann & Robert H. Lurie Children’s Hospital of Chicago is committed to helping 
patients and their families throughout all aspects of illness. Children like [child’s name] remind 
us that, despite our efforts, there are some patients we simply cannot save.  As a doctor who 
works in the pediatric intensive care unit (PICU), I am witness to this sad fact too often. 
Continuing our goal of learning how to provide the best support possible to children and their 
families in the PICU, we would like to follow up with you about your experience in the PICU, 
your views on the research that you participated in, and how your are doing after your child’s 
stay in the PICU. 
 
Enclosed is a survey for you to complete and return to us in the self-addressed stamped envelope 
provided. In addition to the survey, you may also take part in a telephone interview. 
 
If we do not receive the survey packet back within 2 weeks, our study team will call you to ask if 
you are interested in participating in an interview and remind you to complete the survey. If you 
do not wish for someone to call you about this, please let us know by sending back the attached 
form in the envelop provided.  
 
If you have any questions please feel free to contact the Study Coordinator, Laura Campbell 
(312-227-1618, lacampbell@luriechildrens.org), or myself, Dr. Kelly Michelson (312-227-1606, 
email kmichelson@luriechildrens.org).  
 
No one understands better than you the difficulties faced by a family when a child is dying. We 
hope to learn from your experiences by hearing your story and the stories of other families whose 
children have died in the intensive care unit.  
 
Thank you for your time and participation. 
 
 
Sincerely, 
 
 
 
Kelly Michelson 
Attending Physician/Pediatric Intensive Care Unit 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

 
 
 
 
 
 
DECLINE Participation 
 
 
 Please DO NOT call my home about the study called, “Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate 
Study.” 
 
 
 
 
 
 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Estimado(a) [Potential Participant]: 
 
Agradecemos su participación en nuestro proyecto de investigación, “Estudio de navegación 
(Navigate Study): Mejoramiento del proceso de comunicación en la Unidad de Cuidado 
Intensivo Pediátrico para los pacientes que se enfrentan a decisiones que suponen un cambio de 
vida”: 
 
El personal del Ann & Robert H. Lurie Children’s Hospital of Chicago se compromete a ayudar 
a los pacientes y sus familias a lo largo de todos los aspectos de la enfermedad. Los niños como 
[child’s name] nos recuerdan que, a pesar de nuestro esfuerzo, a veces existen pacientes que 
simplemente no podemos salvar.  Como médica integrante del equipo que conforma la Unidad 
de Cuidados Intensivos Pediátricos (PICU, pediatric intensive care unit), desafortunadamente he 
sido testigo de este hecho demasiadas veces. Para continuar trabajando por nuestro objetivo, de 
aprender a proporcionar el mejor apoyo posible a los niños y sus familias en PICU, nos gustaría 
tener seguimiento con usted acerca de su experiencia en PICU, su opinión sobre la investigación 
en la que participó y cómo se encuentra después de la estancia de su hijo en PICU. 
 
Adjunta se encuentra una encuesta para que usted la conteste y nos la envíe en el sobre 
estampado que también le proporcionamos. Además, también puede participar en una entrevista 
telefónica. 
 
Si no recibimos el sobre con la encuesta en el transcurso de 2 semanas, nuestro equipo del 
estudio le contactará por teléfono para preguntarle si le interesa participar en una entrevista y 
recordarle contestar la encuesta. Si no desea recibir una llamada acerca de este asunto, le 
pedimos que nos lo haga saber enviando el formulario adjunto en el sobre que le 
proporcionamos.  
 
Si tiene preguntas, no dude en contactar a la coordinadora del estudio, Laura Campbell (312-227-
1618, lacampbell@luriechildrens.org), o a mí, la Dra. Kelly Michelson (312-227-1606, 
kmichelson@luriechildrens.org).  
 
Nadie comprende mejor que usted las dificultades enfrentadas por una familia en el proceso de 
perder un hijo. Esperamos aprender de sus experiencias y las de otras familias cuyos hijos 
fallecieron en la unidad de cuidados intensivos.  
 
Le agradecemos su tiempo y su participación.   
 
Atentamente, 
 
 
Kelly Michelson 
Médica adjunta de la Unidad de Cuidados Intensivos Pediátricos 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

RECHAZAR la participación 
 
 
 Por favor NO LLAMEN a mi hogar acerca del“Estudio de navegación (Navigate Study): 
Mejoramiento del proceso de comunicación en la Unidad de Cuidado Intensivo Pediátrico para 
los pacientes que se enfrentan a decisiones que suponen un cambio de vida”. 
 
 
 
 
 
 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Dear [Potential Participant], 
 
 
Thank you for your participation in our research project, Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate Study. 
 
The staff at Ann & Robert H. Lurie Children’s Hospital of Chicago is committed to helping 
patients and their families throughout all aspects of illness. Children like [child’s name] remind 
us that, despite our efforts, there are some patients we simply cannot save.  As a doctor who 
works in the pediatric intensive care unit (PICU), I am witness to this sad fact too often. 
Continuing our goal of learning how to provide the best support possible to children and their 
families in the PICU, we would like to follow up with you about your experience in the PICU, 
your views on the research that you participated in, and how your are doing after your child’s 
stay in the PICU. 
 
Enclosed is a survey for you to complete and return to us in the self-addressed stamped envelope 
provided 
 
If we do not receive this packet back within 2 weeks, our study team will call you to remind you 
to complete the survey. If you do not wish for someone to call you about this, please let us know 
by sending back the attached form in the envelop provided. 
 
If you have any questions please feel free to contact the Study Coordinator, Laura Campbell 
(312-227-1618, lacampbell@luriechildrens.org), or myself, Dr. Kelly Michelson (312-227-1606, 
email kmichelson@luriechildrens.org).  
 
No one understands better than you the difficulties faced by a family when a child is dying. We 
hope to learn from your experiences by hearing your story and the stories of other families whose 
children have died in the intensive care unit.  
 
Thank you for your time and participation. 
 
 
Sincerely, 
 
 
 
Kelly Michelson 
Attending Physician/Pediatric Intensive Care Unit 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

 
 
 
 
 
 
DECLINE Participation 
 
 
 Please DO NOT call my home about the study called, “Improving Communication in the 
Pediatric Intensive Care Unit for Patients Facing Life-Changing Decisions: The Navigate 
Study.” 
 
 
 
 

[Date] 
 
[Potential Participant]  
[Address] 
[Address] 
 
 
Estimado(a) [Potential Participant]: 
 
Agradecemos su participación en nuestro proyecto de investigación, “Estudio de navegación 
(Navigate Study): Mejoramiento del proceso de comunicación en la Unidad de Cuidado 
Intensivo Pediátrico para los pacientes que se enfrentan a decisiones que suponen un cambio de 
vida”: 
 
El personal del Ann & Robert H. Lurie Children’s Hospital of Chicago se compromete a ayudar 
a los pacientes y sus familias a lo largo de todos los aspectos de la enfermedad. Los niños como 
[child’s name] nos recuerdan que, a pesar de nuestro esfuerzo, a veces existen pacientes que 
simplemente no podemos salvar. Como médica integrante del equipo que conforma la Unidad de 
Cuidados Intensivos Pediátricos (PICU, pediatric intensive care unit), desafortunadamente he 
sido testigo de este hecho demasiadas veces. Para continuar trabajando por nuestro objetivo, de 
aprender a proporcionar el mejor apoyo posible a los niños y sus familias en PICU, nos gustaría 
tener seguimiento con usted acerca de su experiencia en PICU, su opinión sobre la investigación 
en la que participó y cómo se encuentra después de la estancia de su hijo en PICU. 
 
Adjunta se encuentra una encuesta para que usted la conteste y nos la envíe en el sobre 
estampado que también le proporcionamos. 
 
Si no recibimos el paquete en el transcurso de 2 semanas, nuestro equipo del estudio le 
contactará por teléfono para recordarle contestar la encuesta. Si no desea recibir una llamada 
acerca de este asunto, le pedimos que nos lo haga saber enviando el formulario adjunto en el 
sobre que le proporcionamos. 
 
Si tiene preguntas, no dude en contactar a la coordinadora del estudio, Laura Campbell (312-227-
1618, lacampbell@luriechildrens.org), o a mí, la Dra. Kelly Michelson (312-227-1606, 
kmichelson@luriechildrens.org).  
 
Nadie comprende mejor que usted las dificultades enfrentadas por una familia en el proceso de 
perder un hijo. Esperamos aprender de sus experiencias y las de otras familias cuyos hijos 
fallecieron en la unidad de cuidados intensivos.  
 
Le agradecemos su tiempo y su participación.   
 
Atentamente, 
 
 
 
Kelly Michelson 
Médica adjunta de la Unidad de Cuidados Intensivos Pediátricos 
Ann & Robert H. Lurie Children’s Hospital of Chicago  

 
RECHAZAR la participación 
 
 
 Por favor NO LLAMEN a mi hogar acerca del“Estudio de navegación (Navigate Study): 
Mejoramiento del proceso de comunicación en la Unidad de Cuidado Intensivo Pediátrico para 
los pacientes que se enfrentan a decisiones que suponen un cambio de vida”. 
 
 
 
 

Dear Colleague, 
 
I am writing to you to ask for your participation in a short survey as a part of a research study funded by 
the Patient-Centered Outcomes Research Institutes.  
 
The purpose of this study is to understand and support better communication in the pediatric intensive 
care unit (PICU) between parents of critically ill children and the healthcare team and among the 
healthcare team. For this study we will be testing an intervention called PICU Supports. PICU Supports 
uses a navigator (a person) as well as other tools to support communication and decision making in the 
PICU. Prior to starting the PICU Supports program I am interested in getting information about how 
healthcare team members who care for PICU patients view communication in the PICU.  
 
I am reaching out to you because you are a healthcare provider who cares for PICU patients and families 
of PICU patients. I am interested to know how you perceive communication in the PICU, specifically 
around the decision making process for patients in the PICU. I am requesting that you complete this 
survey now, before the program is introduced, and then again after the program has concluded (in 
about 2 years). 
 
This survey will take about 10 minutes to complete and is an important piece in learning about 
communication in the PICU. Please click on the link below to participate. 
 
For more information about this study please feel free to contact me, or visit Clinical Trials.gov 
 
Thank you in advance for your participation, 
Kelly Michelson  
 

 
 
 
 
Healthcare Team Survey 1 
 
Thank you for helping us to know more about communication in the 
pediatric intensive care unit. This survey asks you for some basic 
information about yourself and your opinion about communication 
among healthcare team members involved in the care of PICU 
patients. 
 
 
 
 
 
 
Today’s date is:  
 
 
 
 
 
 
Month XX 
Day XX 
Year XXXX 

 
 
Healthcare Team Survey 1 
 
Please continue on the next page  
 
Page 2 
 
Version Date:  
Participant ID: 
Research Study Title: Improving Communication in the PICU for Patients Facing Life-Changing 
Decisions: the Navigate Study 
From: Ann & Robert H. Lurie Children’s Hospital of Chicago 
Principle Investigator: Kelly Michelson, MD, MPH, email: kmichelson@luriechildrens.org,             
telephone: 312-227-1606 
Sponsor: Patient-Centered Outcomes Research Institute (PCORI) 
The purpose of this study is to understand and support better communication in the pediatric intensive 
care unit (PICU) between parents of critically ill children and the healthcare team and among the 
healthcare team. The study will determine the benefits or lack of benefits of a program called “PICU 
Supports,” an intervention dedicated to supporting communication. We are doing this study because 
we think that the PICU Supports program may improve patient and family experiences, particularly 
when parents of PICU patients are involved in making difficult decisions for their child. You are being 
asked to complete this survey because you are a healthcare provider who cares for PICU patients and 
families of PICU patients. We are interested in your views about collaboration among healthcare team 
members in the PICU. 
This survey asks questions about you and your views on team collaboration in the PICU. It should take 
no more than 10 minutes to complete. 
By completing this survey you are agreeing to participate in the research study. Participation is 
completely voluntary: you do not have to participate. You may also skip any question you do not wish 
to answer. Your choice about participation will not change any present or future relationships with 
Lurie Children's Hospital. 
There are no anticipated benefits to participants. There will be no costs to you for participating in this 
research study. This study has minimal risk to you.   The only risk is that someone outside of the study 
team may become aware of your participation.  The study team will do everything possible to keep 
your information confidential.  Your e-mail address will not be linked to your responses. Only a study 
ID number generated by REDCap (this online data entry system) will be linked to your 
responses.  Your contact information will be stored in a password protect file and will not be disclosed 
to anyone outside of the research team.  
If you have any questions, please contact Dr. Kelly Michelson (Principle Investigator) at ext. 71606 or 
Ms. Laura Campbell (Research Coordinator) at ext. 71618, or visit Clinical Trials.gov 
 
Please read the header of each page prior to answering the questions. 
Thank you for helping us to know more about communication in the pediatric intensive care 
unit!! 
 
 

 
 
Healthcare Team Survey 1 
 
Please continue on the next page  
 
Page 3 
 
Version Date:  
Participant ID: 
Please mark an “X” in the box next to the answer that best describes you, and/or fill in the 
blank. 
 
1. What is your sex?      Female      Male   
 
    
2. What year were you born in? _____________ 
 
 
 
      Year XXXX                        
 
3. What is your position at the hospital?  
 Advanced Practice Nurse  
Please indicate your specialty _________________________ 
 Attending Physician 
Please indicate your specialty _________________________ 
 Chaplain 
 Child-life Specialist 
 Fellow Physician 
Please indicate your specialty _________________________ 
 PICU Hospitalist 
 Resident Physician  
Please indicate your specialty _________________________ 
 Staff Nurse 
 Social Worker 
 Other ____________________________________________(describe) 
 
 
4. How many years have you been in your current position? ____________ 
 
5. What racial category best describes you? (select all that apply) 
 
 American Indian / Alaska Native  
 Asian 
 Black / African American 
 Native Hawaiian  or Other Pacific Islander 
 White 
 Other ____________________________________________(describe) 
 
 
6. What ethnic group best describes you? 
 Hispanic or Latino 
 Not Hispanic or Latino 
 

 
 
Healthcare Team Survey 1 
 
Please continue on the next page  
 
Page 4 
 
Version Date:  
Participant ID: 
Please circle the number that best represents your judgment about collaboration among 
PICU team members in making decisions for PICU patients 
By “PICU team members” we mean PICU attendings, fellows, advance practice nurses, social 
workers, chaplains, child-life specialists, respiratory therapists, or any other PICU-focused 
healthcare team member. 
By “decisions”, please consider the range of care decisions encountered in the PICU. 
 
1. PICU team members plan together to make decisions about care for PICU patient. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree 
 
 
                                                     
        
      Strongly Agree  
 
2. Open communication between PICU team members takes place as decisions are made for 
PICU patients. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
3. Decision-making responsibilities for PICU patients are shared among PICU team members. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree 
 
 
                                                     
        
      Strongly Agree  
 
4. PICU team members cooperate in making decisions for PICU patients. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree 
 
 
                                                     
        
      Strongly Agree  
 
5.  In making decisions, all PICU team members’ concerns about patients’ needs are 
considered. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
6. Decision-making for PICU patients is coordinated among PICU team members. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree 
 
 
                                                     
        
      Strongly Agree  
 
7. How much collaboration among PICU team members occurs in making decisions for PICU 
patients? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
No  
 
 
 
 
 
 
 
 
 
       Complete  
 
Collaboration  
 
                                                                         Collaboration 
 
 
 
 
 
 
 
  
8. How satisfied are you with the way decisions are made for PICU patients, that is with the 
decision-making process, not necessarily with the decisions themselves? 
 
 
 
 1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
  Not Satisfied  
                                                                                              Very Satisfied 
 
9. How satisfied were you with decisions made for PICU patients? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied  
                                                               
 
           Very Satisfied 
©J. Baggs, 1992 

 
 
Healthcare Team Survey 1 
 
Please continue on the next page  
 
Page 5 
 
Version Date:  
Participant ID: 
Please circle the number that best represents your judgment about collaboration between 
PICU team members and non-PICU team members in making decisions for PICU patients 
 
Definitions of PICU team members and decision making remain the same as the above. 
By “Non- PICU team members” we mean any subspecialty, general pediatrics, or non-PICU based 
healthcare team member who cares for patients in the PICU (including attendings, fellows, advance 
practice nurses, social workers, chaplains, child-life specialists) 
 
1. PICU and non-PICU team members plan together to make decisions about care for PICU 
patient. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
2. Open communication between PICU and non-PICU team members takes place as decisions 
are made for PICU patients. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
      Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
 
 
 
 
  
3.  Decision-making responsibilities for PICU patients are shared among PICU and non-PICU 
team members. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
4.  PICU and non- PICU team members cooperate in making decisions for PICU patients. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
5.  In making decisions, all PICU and non-PICU team members’ concerns about patients’ 
needs are considered. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
6. Decision-making for PICU patients is coordinated among PICU and non-PICU team 
members. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree  
 
                                                     
        
      Strongly Agree  
 
7. How much collaboration among PICU and non-PICU team members occurs in making 
decisions for PICU patients? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
No   
 
                                                              
      
 
            Complete 
Collaboration 
 
 
                                                                                Collaboration 
 
 
 
 
 
 
 
 
 
  
8. How satisfied are you with the way decisions are made for PICU patients, that is with the 
decision-making process, not necessarily with the decisions themselves? 
 
  
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 Not Satisfied 
 
                                                               
 
         Very Satisfied 
 
 
 
 
 
 
 
   

 
 
Healthcare Team Survey 1 
 
Page 6 
 
Version Date:  
 
 
 
  
 
     Participant ID:  
9.  How satisfied were you with decisions made for PICU patients? 
 
 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 
 Not Satisfied  
                                                               
                     Very Satisfied 
 
 
©J. Baggs, 1992 
 
 
 
Thank you very much for helping us know more about 
how to help the patients and families we care for.  
Please return this survey in the envelope provided. 
 
 

 
Dear Colleague, 
 
I am writing to you to ask for your participation in a short survey as a part of a research study called, 
“The Navigate Study” funded by the Patient-Centered Outcomes Research Institute.   
 
You recently participated in the care of XX  (initials) who was in bed 16- ____ and admitted to the PICU 
with XX (indication for admission to the PICU).  This patient/family was enrolled in The Navigate Study 
and received the intervention called PICU Supports.   I am interested to know your opinion of the PICU 
Supports intervention used during the care of XX  (initials) and the impact of the PICU Supports 
intervention on communication in the PICU.  If you need additional information to identify this patient, 
please contact Laura Campbell (lacampbell@luriechildrens.org).  
 
This survey will take about 10 minutes to complete. 
 
For more information about this study please feel free to contact me, or visit ClinicalTrials.gov 
 
To participate in this study please click on the link below 
 
Thank you in advance for your participation. 
 
Sincerely,  
Kelly Michelson, MD 
 
 

 
 
 
 
 
 
 
 
 
Thank you for helping us to learn more about communication in 
the pediatric intensive care unit (PICU). This survey asks you for 
some basic information about your opinion about communication 
among healthcare team members involved in the care of PICU 
patients and the effectiveness of the PICU Supports program. 
 
 
Healthcare Team Survey 2 
 
 
 
 
Today’s date is:  
 
 
 
 
Month XX 
Day XX 
Year XXXX 

 
 
Healthcare Team Survey 2 
 
 
 
 
 
 
 
Page 2 
Version Date: 
Continue on to Next Page 
Case ID: 
 
 
 
 
Research Study Title: Improving Communication in the PICU for Patients Facing Life-Changing 
Decisions: the Navigate Study 
From: Ann & Robert H. Lurie Children’s Hospital of Chicago 
Principle Investigator: Kelly Michelson, MD, MPH, email: kmichelson@luriechildrens.org,             
telephone: 312-227-1606 
Sponsor: Patient-Centered Outcomes Research Institute (PCORI) 
Study Purpose: The purpose of this study is to understand and support better communication in the 
pediatric intensive care unit (PICU) between parents of critically ill children and the healthcare team and 
among the healthcare team. We are interested in your views about the benefits or lack of benefits to 
our program called “PICU Supports.”  We are doing this study because we think that providing families 
with an intervention dedicated to supporting communication may improve patient and family 
experiences, particularly when parents are involved in making difficult decisions for their child. You are 
being asked to be in a research study because you are a healthcare provider who cares for PICU 
patients and families of PICU patients and because you have cared for a family receiving the PICU 
Supports program. We are interested in your views about the benefits or lack of benefits to the “PICU 
Supports” program.   
Components in this Research Study Survey: This survey asks question about you, your views on 
team collaboration in the PICU and on acceptability and effectiveness of the PICU Supports program 
Confidentiality: Your responses will remain confidential. Any reports about the information obtained in 
this study will be presented without any person identifying information. 
Voluntary Participation/Withdrawal: Taking part in this study is completely voluntary. You are free to 
not answer any questions or to not participate. Your choice about participation will not change any 
present or future relationships with Lurie Children’s.  
Compensation and Costs: There will be no costs to you for participating in this research study. You 
will receive no compensation for participating in this study.  
Risks: Participation risks are minimal. Some people may have emotional reactions when completing 
the survey.  
Research Study Procedures: When you are finished completing the questions in this survey, please 
place it in the envelope provided and return it as instructed.   
For more information about this study please contact Dr. Kelly Michelson (Principle Investigator) at ext. 
71606 or Ms. Laura Campbell (Research Coordinator) at ext. 71618, or visit Clinical Trials.gov 
 
Participation: By completing the survey you are agreeing to participate in this study. 
These questions are related to decision making for the patient enrolled in The Navigate Study. 

 
 
Healthcare Team Survey 2 
 
 
 
 
 
 
 
Page 3 
Version Date: 
Continue on to Next Page 
Case ID: 
 
 
 
 
Please circle the number that best represents your judgment about the team process and the 
decision(s).  
 
 
 
1. Team members plan together to make decisions about care for this patient. 
 
1  
 
2 
 
3  
 
4 
 
5 
 
6                 7 
Strongly Disagree 
 
 
                                                     
                     Strongly Agree   
 
2.  
Open communication among team members takes place as decisions were made for this 
patient. 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
Strongly Disagree                                                                               
                     Strongly Agree   
 
3. 
Decision-making responsibilities for this patients were shared among team members. 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
Strongly Disagree 
 
 
   
 
 
 
                               Strongly Agree 
 
4.  
Team members cooperated in making decisions. 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
Strongly Disagree 
 
                                                              
                      Strongly Agree 
 
5. 
In making decisions, all PICU team members’ concerns about this patients’ needs were 
considered. 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
 Strongly Disagree 
 
                                                             
 
 
Strongly agree 
 
6. 
Decision-making for this patient was coordinated among team members. 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7  
Strongly Disagree 
 
 
                                                                        
Strongly Agree 
 
7. 
How much collaboration among team members occurred in making decisions for this 
patient? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
          No  
 
 
 
 
 
 
 
 
 
        
  Complete  
 
Collaboration  
 
                                                                          
 
Collaboration  
 
 
 
 
 
 
 
 
  
8. 
How satisfied are you with the way decisions were made for this patients, that is with the 
decision-making process, not necessarily with the decisions themselves? 
 
 1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
Not Satisfied  
                                                                                    
 
Very Satisfied 
 
9. 
How satisfied were you with the decisions made for this patient? 
 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
        7 
Not Satisfied  
                                                               
 
 
 
Very Satisfied 
 
©J. Baggs, 1992 
 
 

 
 
Healthcare Team Survey 2 
 
 
 
 
 
 
 
Page 4 
Version Date: 
Continue on to Next Page 
Case ID: 
 
 
 
 
Please respond to each question or statement by marking an “X” in the appropriate box. 
 
1. 
What is your position at the hospital?  
 Advanced Practice Nurse  
Please indicate your specialty _________________________ 
 Attending Physician 
Please indicate your specialty _________________________ 
 Chaplain 
 Child-life Specialist 
 Fellow Physician 
Please indicate your specialty _________________________ 
 PICU Hospitalist 
 Resident Physician  
Please indicate your specialty _________________________ 
 Staff Nurse 
 Social Worker 
 Other ____________________________________________(describe) 
 
Not at All 
Helpful 
Not Very 
Helpful 
Somewhat 
Helpful 
Extremely 
Helpful 
Unable 
to 
Assess 
2. How helpful was PICU 
Supports in supporting 
communication in the PICU? 
  
  
  
  
  
 
 
 
 
 
 
Not at All 
Integrated 
Not Very 
Integrated 
Somewhat 
Integrated 
Extremely 
Integrated 
3. How much did the navigator 
integrate with the clinical 
team?  
  
  
  
  
 
 
 
 
 
 
 
Less time 
The same 
amount of 
time 
More Time 
4. Compared to other families, did you spend 
the same, more, or less time with the 
family? 
  
  
  
 
 
   Yes 
    No 
5. Would you recommend PICU Supports to 
a friend if one of their family members 
were admitted to the PICU? 
 
  
  
 

 
 
Healthcare Team Survey 2 
 
 
 
 
 
 
 
Page 5 
Version Date: 
Continue on to Next Page 
Case ID: 
 
 
 
 
Compared to families that are not part of this study, did PICU Supports have a positive 
impact on:  
 
 
    Yes 
    No 
6. The quality of communication between the patient’s family 
and the healthcare team? 
  
  
7. The quality of communication within the healthcare team? 
  
  
8. The timeliness of communication between the patient’s 
family and the healthcare team? 
  
  
9. The family’s ability to articulate their values/preferences to 
the healthcare team regarding the care of their child? 
  
  
10. The hospital experience for the family? 
  
  
11. The family-centeredness of care delivered? 
  
  
 
 
In your view how useful were the following components of PICU Supports: 
 
Not at All 
Helpful 
Not Very 
Helpful 
Somewhat 
Helpful 
Extremely 
Helpful 
Unable 
to 
Assess 
12. The Navigator’s weekday 
visits with the family. 
  
  
  
  
  
13. The Navigator’s reports to the 
healthcare team about the 
family. 
  
  
  
  
  
14. The communication log kept 
at the patient’s bedside. 
  
  
  
  
  
15. The regular family meetings 
organized by the navigator. 
  
  
  
  
  
16. The PICU Handbook that the 
family received. 
  
  
  
  
  
17. The “Frontline provider sheet” 
given to the healthcare team 
by the navigator. 
  
  
  
  
  
18. The calendar/diary in the back 
of the PICU Handbook. 
  
  
  
  
  

 
 
Healthcare Team Survey 2 
 
 
 
 
Page 6 
 
 
Version Date:  
Case ID #: 
Please comment on any components of the PICU Supports program that you found 
useful. 
 
 
 
 
 
 
Please comment on any components of the PICU Supports program that interfered with 
your work or with the care of the patient and/or family. 
 
 
 
 
 
Any other suggestions/comments? 
 
 
 
 
 
 
Thank you very much for helping us know more about 
how to help the patients, families and healthcare 
providers in the PICU.  
Please return this survey in the envelope provided. 
 

HTM Focus Group Guide 
1. Obtain general feedback on PICU Supports 
a. Having had patients and families who received the PICU Supports program, what is your 
general impression about PICU Supports? 
b. What parts of PICU Supports seemed to work well? 
c. What parts of PICU Supports did not work well and why? 
 
2. Obtain feedback on specific components of PICU Supports 
a. What impact did the navigator have on communication between parents/families and 
HTMs? 
b. What impact did the navigator have on communication among HTMs (within the PICU and 
between the PICU and non-PICU HTMs) 
c. What kind of support do you feel the navigator was able to give parents/families and 
patients (if relevant).  
d. What was the impact for you of the following parts of PICU Supports: 
i. 
The regular family meetings 
ii. 
The frontline provider sheet 
iii. 
The communication log 
iv. 
The PICU Handbook 
v. 
The parent diaries 
vi. 
Any informational/educational materials given to the parents 
 
3. Obtain feedback on the impact of PICU Supports on HTM workflow. 
a. How did PICU Supports impact your workflow? 
b. How did PICU Supports impact the workflow of others on the team? 
 
4. Obtain feedback on how to improve PICU Supports. 
a. How could the navigator better support parents/families, patients, and HTMs? 
b. What else could we do to improve PICU Supports? 
 

 
 
 
 
 
Healthcare Team 
Post-Focus Group Questionnaire 
 
Thank you for helping us to learn more about communication in 
the pediatric intensive care unit. Before you leave, please 
complete this questionnaire which asks you for some basic 
information about yourself and your reactions to participating in 
this discussion.   
 
 
 
Today’s date is:  
 
 
 
 
 
Month XX 
Day XX 
Year XXXX 

HTM Post-Focus Group Questionnaire 
 
Please continue on the next page  
 
Page 2 
 
Version Date:  
Participant ID: 
 
 
Please mark an X in the box next to the answer that best describes you, and/or fill 
in the blank. 
 
1. What is your gender?      Female      Male   
 
    
2. What year were you born in? _____________ 
 
 
 
 
Year XXXX                        
 
 
3. What is your position at the hospital?  
 
 
 Advanced Practice Nurse  
Please indicate your specialty _________________________ 
 Attending Physician 
Please indicate your specialty _________________________ 
 Chaplain 
 Child-life Specialist 
 Fellow Physician 
Please indicate your specialty _________________________ 
 PICU Hospitalist 
 Resident Physician  
Please indicate your specialty _________________________ 
 Staff Nurse 
 Social Worker 
 Other ____________________________________________(describe) 
 
 
4. How many years have you been in your current position? ____________ 
 
 
5. What racial category best describes you? (select all that apply) 
 
 American Indian / Alaska Native  
 Asian 
 Black / African American 
 Native Hawaiian  or Other Pacific Islander 
 White 
 Other ____________________________________________(describe) 
 
 

HTM Post-Focus Group Questionnaire 
 
Please continue on the next page  
 
Page 3 
 
Version Date:  
Participant ID: 
 
 
 
 
 
 
6. What ethnic group best describes you? 
 
 Hispanic or Latino 
 Not Hispanic or Latino 
 
 
7. Overall, how easy or hard was it for you to participate in this research? 
 
 Very Easy 
 Easy 
 Neither Easy nor Hard 
 Hard 
 Very Hard 
 
Please explain below. 
 
 
 
 
 
 
 
 
 
 
 
8. Please include any other information or comments below. 
 
 
 
 
 
 
 
 

WEEKLY PARENT DIARY/ LOG    
Date 
Events 
Goals/Concerns 
Questions/Requests/Notes 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
CHILD NAME (First and Last) ____________________________________DATE_______________ 
 
This information is not part of the patient’s medical record.  This check in log is being used for 
research purposes only (specifically study IRB #, Michelson). If you have any questions about this 
sheet or the research study, please contact Kelly Michelson 312-227-1606 or 
kmichelson@luriechildrens.org**** 
 
  
Prepared by: 
Family Issues  (Include Cultural or Religious Issues) 
Examples: 
Two other kids at home 
Mom works 
Dad is usually here overnight 
 
 
 
 
 
 
 
Family Identified Needs/Goals 
Example: It is important to the family that x y and z happen 
Key Team Members 
 
Family Communication 
Preferences 
 
Family Availability  
(Days and Times) 
 Examples:  The family really 
likes to work with Dr. X 
Dad likes the Social Workers 
 
In the room (in front of child) 
Outside of room (nothing 
discussed in front of the child) 
 
Family does not want to 
include Aunt Susie in any of 
the communication 
 
Example: The family plans to be 
here Mondays and  
Fridays after 5pm and 
Wednesdays and Thursdays in 
 
 
 

 
CHILD NAME (First and Last) ____________________________________DATE_______________ 
 
This information is not part of the patient’s medical record.  This check in log is being used for 
research purposes only (specifically study IRB #, Michelson). If you have any questions about this 
sheet or the research study, please contact Kelly Michelson 312-227-1606 or 
kmichelson@luriechildrens.org**** 
 
  
Prepared by: 
Family Issues  (Include Cultural or Religious Issues) 
 
 
 
 
 
 
 
 
Family Identified Needs/Goals 
 
Key Team Members 
 
Family Communication 
Preferences 
 
Family Availability 
(Days and Times) 
 
 
 
 
 
 

 
 
COMMUNICATION LOG V 09/12/14 
 
 
**** The Information on this sheet is not part of your child’s treatment.  This information is not part 
of the patient’s medical record.  This check in log is being used for research purposes only (specifically 
study IRB #, Michelson). If you have any questions about this sheet or the research study, please 
contact Kelly Michelson 312-227-1606 or kmichelson@luriechildrens.org**** 
Date_____________________ 
**FOR NON-PICU CARE PROVIDERS ONLY** 
 
Please fill out the information below when you visit this patient or his/her family  
(PLEASE PRINT) 
 
Please 
Check one 
NAME 
(PLEASE PRINT) 
 
SERVICE 
(PLEASE PRINT) 
 
ROLE  
(ex: attending, fellow, 
physical therapist etc.) 
TIME IN 
Talked with 
Family/Pt 
YES 
NO 
 
 
  
  
  
  
 
 
  
  
  
  
 
 
  
  
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Family Meeting Note 
Date: 
Time: 
Participants in the meeting: 
Use of an interpreter: (yes/no) 
Discussion: 
Plans:  
 
Navigator 
Pager number 

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HEARTLIGHT
HEARTLIGHT
HEARTLIGHT 
Coping with 
Coping with 
Coping with  
grief when 
grief when 
grief when  
your child dies
your child dies
your child dies 
____________
____________
____________ 
Support for families coping 
Support for families coping 
Support for families coping  
With illness and loss
With illness and loss
With illness and loss 
 
Institutional Review Board (IRB) #2015-146,  The Navigate Study. Dr. Kelly Michelson. The content of this  
brochure has been approved by the IRB. 

Table of Contents 
2 Parents’ grief 
5 Relationships with family and friends 
7 Helping children cope with death 
10 Participation of children in funeral services 
11 Living with grief 
11 Final thoughts 

Message to parents  
On behalf of The Navigate Study, we want to extend to you and your family our condolences 
on the death of your child. Whether expected or unexpected and regardless of age or cause, 
your child’s death may be impossible to comprehend and will surely change your family’s life 
forever. The death of a child is undoubtedly one of the most difficult experiences anyone 
could face in their lifetime.  
Heartlight, the bereavement program at Lurie Children’s, offers support groups, resources, 
educational materials, and can assist with the impact of grief on you and your other children 
at school or work. This is offered at no cost to you.  
 
Please do not hesitate to call if you ever need support or someone to talk with. 
We hope we can be a resource and support to you and your family.  
 
Heartlight can be reached at 312.227.3930.  
 
PAGE 1 

Parents’ grief  
Initial reaction  
Every individual is unique in their reactions following the death of a child. Many parents 
describe feelings of shock, overwhelming numbness or “being in a fog.” You may feel  
unable to respond to people and events around you. Some conversations may seem  
distant and difficult to recall, yet other details may seem crystal clear. You may be unable 
to ask questions or  hear details concerning your child’s death.  Decisions concerning the 
funeral and burial arrangements may be difficult for you.  Or you may find comfort in the 
structure and the responsibility of the funeral preparations.  You may become focused on 
taking care of others and the tasks necessary, and, it may be only after many days or 
weeks that you being to “feel” the loss. 
Delayed responses to grief  
Some parents may not experience the full scope of their loss until sometime after the 
death — perhaps weeks or months later. The deep emotional and physical pain of grief 
can emerge with intense feelings of anger, sorrow, fear and emptiness. You may question 
circumstances related to your child’s death. Feelings of guilt concerning what you should 
or should not have done may surface. You may remember or even re-experience past 
feelings of loss from your own childhood or adulthood. And many parents are surprised by 
what does trigger certain emotions or memories of their child.  
 
Coping with responses from other people  
The death of a child is particularly tragic, and, consequently, some people may feel  
uncertain as to what to say or do, or how to effectively support you. Friends and family 
may be at a loss for words, or fearful that they may say the wrong thing. Some people 
may unintentionally say things that are upsetting or insensitive. How you respond will 
probably depend on the particular situation and your level of emotional energy at that 
time. Sometimes you may choose to ignore things that seem hurtful, while other times 
you may choose to say, “That is not helpful to me.” Do not hesitate to let people know 
what they CAN DO to help you. Others may offer their opinion on how you should handle 
things, but don’t be afraid to say NO. Your responsibility is to you and your family.  
 
PAGE 2 

Physical reactions to grief  
Physical ailments may appear or become aggravated by the grief you are  
experiencing. Physical reactions may include difficulty eating or over-eating, upset stomach, 
physical exhaustion, headaches, heart palpitations, nervousness or  
shortness of breath. Many parents struggle with their short-term memory and an  
inability to concentrate. This is normal, but if these reactions persist or interfere with your re-
sponsibilities, seek help from your doctor or a counselor.  
 
You may find that you are unable to sleep or that you sleep all the time. When you do sleep, 
you may dream of your child. Some may find great comfort in these dreams, while others may 
find them unsettling. And it is not uncommon for one family member to have a dream, leaving 
others feeling jealous or angry when they have not. Be  
patient with yourself. Over time, you may find that your dreams, and those of others, may be-
come a source of healing and comfort. In addition, you may feel other signs of your child’s 
presence throughout your day and all around you.  
 
Coping with anger  
Anger is a common and normal reaction following the death of a child. You may feel angry to-
ward the physicians and nurses, or your spouse and other family members. You may wonder 
if somehow they caused your child’s death. You may question your faith and feel anger toward 
God or the higher power you believe in. Seeing other  
families with children may also be painful, causing you to feel jealous of their  
opportunity to be together. You may feel angry at their apparent lack of appreciation for each 
treasured moment with their children, and contrast that with your inability to spend any more 
time with your child.  
 
Anger also may be directed toward yourself in the form of self-blame or feelings of  
failure and shame. These feelings may challenge your perception of yourself as a  
competent, loving and protective parent. Some parents even question their ability to care for 
surviving or subsequent children. You may feel less than a whole person. While these are natu-
ral feelings during this time, it is important to remember your strengths as a parent, that you did 
all that you could to care for your child and you tried to meet their needs in the best possible 
way. Remembering all the positive times spent with your child will ultimately be a source of 
great comfort.  
PAGE 3 

Coping with loneliness  
Children consume a large amount of a parent’s time and energy each and every day.  
After the death of a child, you may feel an overwhelming sense of loneliness. Even though you 
may be surrounded by family and friends who love and care for you, your grief isolates you. This 
may be accompanied by a yearning for your child and a physical sensation of aching inside your 
body. Your arms and legs may feel heavy and clumsy.  
 
You may feel as though you are functioning on a different emotional level than those around 
you. It may be difficult to put the experience of your grief into words. Many parents describe 
times when they feel as though they have lost all control of their emotions. Sometimes they fear 
they are losing their minds. Some parents may attempt to fill the emptiness by wishing to have 
another child. This is a decision that is usually best postponed during the immediate period after 
a child’s death to allow time for parents to mourn their loss. After a time, you may be more emo-
tionally prepared to welcome a new baby into your life.  
 
Coping with memories of your child  
Many parents report a sense of yearning or searching for their child. You may feel an over-
whelming desire to hold your child in your arms again, to be reunited. You may long for the 
smell or the touch of their skin. The frustration in not being able to fulfill this desire may be ex-
perienced as restlessness, irritability and depression. You may  
struggle to keep a clear picture in your mind of your child’s appearance and special manner-
isms. Many parents fear forgetting their child.  
 
Share your memories with others and encourage them to share any thoughts, memories or re-
flections they may have with you. Each story is an amazing gift. You may even want to write 
them down so that you won’t need to worry about forgetting them. If you have  
surviving children, allow them to share their thoughts, feelings and memories. Many  
siblings find great comfort in talking about their brother or sister who died. It can be helpful to pro-
vide a special memory box where these memories can be stored and brought out whenever you 
or your children feel the need to reminisce. You may also find it comforting to keep special re-
membrances of your child or to be able to talk with others who hold memories of your child. Re-
membrances may include a picture, a name bracelet, a blanket, a lock of hair, an article of cloth-
ing, a special toy or cards from family and friends.  
PAGE 4 

Relationships with  
family and friends  
 
Immediately after the death of your child, relatives and friends may gather around you  
to offer their comfort and support. You may find there are special people you wish to 
have near you and with whom you can share some of your feelings. On the other hand, 
you may want some time alone. It is important to let people know what your specific 
needs may be. Relatives and friends may be able to offer special help by attending to 
the details of arrangements that must be made immediately after your child’s death. Or 
just by helping with any household daily needs or the care of surviving children.  
 
It may help to know that these experiences are common for families grieving the death  
of a child. It is important to acknowledge that everyone responds differently to grief and 
this grief may influence how family members relate to each other. Keeping the lines of 
communication open is important during this healing process.  
 
The death of a child touches immediate and extended family members and friends.  
The way each person expresses his or her grief may vary markedly. Spouses may  
experience the death differently and each works through grief in his or her own way.  
You may feel “out-of-synch” with each other. Other children in the family may not fully  
understand events and changes in family behaviors associated with a death. It may be 
difficult for you to respond to the grief of others when you are struggling with your own 
grief. Family members sometimes find it hard to support and comfort each other.  
 
You may find as time goes on that relatives and friends are less available for support.  
At a time when you still need someone who will listen and care about you, relatives  
and friends may be returning to their daily routines. The care and support you felt at  
the time of your child’s death may seem to be gone. You may sense that people are  
uncomfortable hearing about your continuing grief. People may suggest that it is time to 
put your grief aside and return to routine activities. You may feel as though you must hide 
your grief inside. At times, people may say things, though with good intentions, that may 
be hurtful to you.  
PAGE 5 

It is very important during this period that you find someone who will listen, someone 
who is willing to bear your grief with you, someone who can continue to share your 
child with you. This may be a family member, close friend or maybe a professional. 
Some parents find it helpful to talk with other parents who have experienced the death 
of a child. There are groups available to meet this need.  
PAGE 6 

Helping children cope  
with death  
 
Parents are often concerned about how to explain death to other children — siblings,  
cousins, neighbors, schoolmates and friends. It is important to give children truthful  
answers in a loving and supportive manner. Children do not understand death in the same way 
adults do. Their understanding of death depends on their age and their level of  
cognitive development.  
 
Infants  
Even though infants do not have an understanding of death, they are directly affected by separa-
tion from their nurturer and their caregiver’s emotions. Infants respond to the emotion around 
them. Distress is visible in an infant when suffering a loss, but usually they can be easily 
soothed. Infants have few language skills, so you have to rely on their behaviors. Symptoms 
may include change in sleeping patterns, crankiness, crying and clinging.  
 
Preschool and toddlers  
Young children often confuse fantasy and reality. They typically understand death as a separa-
tion, something like sleep. They need to hear that death is not like going to sleep. When some-
one dies, their body no longer works, they are not alive anymore, so they  
cannot wake up again. Young children also have “magical thinking” powers and fantasize 
about the return or healing of the person who died. Because they believe wishes come true, 
they may believe that they can wish the person back or that they caused the person to die. 
They need reassurance that they did not cause the person to die, that it is not their fault and 
that a person who has died cannot return.  
 
A death in the family can cause lots of changes in the family dynamic. Common reactions of 
young children following a death include clinging to their primary caregiver, crankiness, fear 
someone else or they themselves will die, difficulty sleeping, regressive behavior (such as 
bedwetting) or changes in their eating patterns. For young children, the changes in routines 
can be difficult. It is helpful to maintain as much consistency in routines as is possible for your 
preschooler. They benefit from close contact with a person significant to them. They need to 
be able to talk  
PAGE 7 

about the person who died. They may be sad for a short time and then go about their play as if 
nothing had happened. Their ability to tolerate the pain associated with grief  
is limited, and frequently use play as a way of coping. Preschoolers learn from  
example and model how other people react to death. A simple explanation about why people cry 
may be helpful. For example, you may say that people cry when they are sad or because they 
miss the person who died. Crying helps the hurt feel better. When someone dies, it often takes a 
long time for the hurt to feel better.  
 
School-aged children  
School-aged children, six to 12, have a more realistic understanding of death. They  
realize that people can die from accidents or illnesses. They are often curious about what hap-
pens to someone’s body when they die. They may wonder what happens  
at autopsies, wakes, funerals and burials. Children may still feel guilty about being  
“bad” or somehow causing the death. These children may associate mutilation and  
punishment with death. They may think about death as a person — a ghost or “bogeyman.”  
 
Around the age of seven or eight years old, children begin to realize that death is  
irreversible. The death of a loved one may cause them to be anxious. Many children worry that 
someone else in their family may die. It may help to reassure them that most people live a long, 
long time and you can talk about the things you do to take care of yourself. But, it is also common 
for children to worry who will take care of them if  
something would ever happen to you. It may be helpful to discuss a care plan with them.  
It may help children to know that when someone dies, they will not actually see him or her again, 
but he or she can be alive in their memories. You may want to help them think of ways they can 
remember the child who died.  
 
By the time children are 10 or 12 years of age, they are able to understand that death is inevita-
ble, universal and irreversible. How they view death is greatly influenced by the reactions of oth-
ers, especially their parents, as well as their religious beliefs.  
School-aged children need honest, realistic answers to their questions. Adults may find their 
questions upsetting, especially if they are struggling with their own grief. Avoiding  
questions or not responding to questions honestly will cause children to be more  
anxious. Even if you are not able to tolerate the pain of hearing their questions, it is  
important to find someone who they can talk to.  
PAGE 8 

Adolescents  
Adolescents are already struggling with issues of separation and individuation. They  
are often compelled to act like adults, while their coping mechanisms and ability to  
understand death may be more similar to a child’s. Adolescents typically demonstrate 
mood swings. When someone dies, they may idolize the person one minute and  
condemn him or her the next minute. Their grief may be expressed with sobbing or  
embarrassed laughter. The peer group is especially important during the teen years. 
Teenagers are apt to worry about what others think of them. They may not want anyone 
to see them cry, so they may appear stoic and “cool.” Physical symptoms such as  
headaches, stomach problems or changes in menstrual patterns may develop.  
Teenagers often struggle with philosophical or spiritual issues. Some examples might 
be: “If we’re all going to die anyway, why bother living?” “Why love somebody and  
become close when they’re just going to leave you?” “If God loves us, why does God let 
people die?” “It isn’t fair that a child dies.”  “Why my brother or sister or our family?” 
“Why not me?” “Why...?” An adolescent’s understanding of death is more complex and 
their questions can also be more complex. They find the unanswerable questions terribly 
frustrating — as indeed adults do, too. In general, adolescents are also very vulnerable 
to engage in risky behavior, but even more so during this time. Teenagers need open, 
honest and loving support from adults and the opportunity to explore their questions 
without judgment.  
PAGE 9 

Participation of children in  
funeral or burial services  
 
Parents often wonder whether children should attend funeral or burial services. Sharing 
times of special significance like this can help children understand the experience and 
deal with their own feelings of sadness and loss. It is important to give children the choice 
and allow them to make an informed decision about whether or not they want to attend or 
participate in the rituals of your family’s religious and cultural traditions.  
 
Often the fear of the unknown is more upsetting than the reality of the situation. For this 
reason, children need to know what to expect. They need to know how the room will look, 
what will happen during the service and how the dead person will look if the casket is 
open. It is often helpful to bring children to the wake or funeral before many visitors arrive. 
This provides a quiet, private time to say good-bye. Allow children to stay as long as they 
wish and respect their need to leave when they desire. This helps to give them the control 
they need in this situation. It may be helpful to have someone else available to care for 
the children during the service so you are able to do what you need for yourself. Children 
are children first and often need to express their grief in small doses.  
PAGE 10 

 
Living with grief  
The range and intensity of sorrow and grief is different for every person. Everyone 
grieves in his or her own way, and in his or her own time. Your grief experience may 
be influenced by past experiences, cultural and family traditions, relationship with the 
child, circumstances surrounding the death and current life stressors. There is no right 
way to grieve other than the way that feels right to you.  
There may be moments when a passing memory, a special date, holiday, a particular 
smell, a song or a food will trigger some intense feelings of grief. As time passes, the 
intensity will decrease and you may feel better prepared to cope with these  
experiences.  
Final thoughts  
Regardless of our age, we all grieve when someone we love dies. Most, if not all parents 
say that the death of their child is one of the most devastating experiences of their lives. 
Grieving is painful, but necessary. Grief is a very personal journey, but most parents find 
that their pain lessens in time. Sadness changes from a bitter emotion to a feeling that 
allows for memories of happier times to exist beside the pain. We hope you are able to 
remember your child with deep love and be able to appreciate the gift of his or her life.  
PAGE  11 

Notes  
PAGE 12 

Heartlight 
Aﬃliated with  
Ann & Robert H. Lurie  
Children’s Hospital of Chicago 
225 E. Chicago Ave. Box 274 
Chicago IL 60611-2605 
Phone: 312-227-3930 
heartlight@luriechildrens.org 

 
 
NOT all of these words/situations will apply to your child. 
Central line (IJ, femoral line, subclavian): Special intravenous catheter placed in a 
large vein (usually near the neck or groin) to give fluids, medications, or nutrition 
and to draw blood samples for laboratory testing. 
Continuous renal replacement therapy (CRRT): A temporary form of dialysis that 
runs continuously. CRRT can remove toxins and extra fluid from the body. 
Defibrillator: A machine that delivers electric shock to attempt to reset an abnormal 
heart rhythm. 
DNAR/DNR (Do not attempt resuscitate/Do not resuscitate): An order telling 
doctors and nurses not to perform CPR if the patient stops breathing or if their heart 
stops. A DNAR order is ONLY placed after a conversation with and agreement from 
the parents. A DNAR/DNR order does NOT mean taking away other treatments.  
EKG (electrocardiogram): A tracing of the electrical signals of the heart. 
Endotracheal tube (ETTube): A tube that is placed in the airway (trachea) through 
the mouth or nose and attached to a breathing machine to help the patient breathe. 
Extubation: The process of removing an endotracheal tube (ETTube) from a patient. 
Gastrostomy tube (G-tube): A feeding tube that is surgically placed directly from 
the surface of the belly into the stomach. 
Intubation: The process of placing an endotracheal tube (ETTube) when a patient 
is unable to breathe on his/her own and needs a breathing machine.  
Mechanical ventilator (breathing machine): A machine used to help a patient 
breathe. 
Nasal cannula: Plastic tube that fits around the head with two short prongs into the 
nostrils. It provides the patient with oxygen (from a tank or wall source). 
Nasogastric tube (NGT, NG), orogastric tube (OGT, OG): A tube placed through 
the nose or mouth into the stomach. It is used to give medicines and feedings or to 
drain stomach contents.  
Palliative Care: Care that focuses on reducing pain and discomfort and increasing 
quality of life. 
Pulse oximeter: A device that measures the amount of oxygen carried by the blood.  
Sedation: Medicine to make patients sleepy, relaxed, and less aware of 
uncomfortable or distressing conditions. 
Vasoactive 
medications (inotropes, pressors, drips): 
medications 
given 
continuously to raise or lower the blood pressure and support the heart. 
Pediatric Intensive Care Unit (“PICU”) 
&  
Cardiac Intensive Care Unit (“CICU”) 
Parent Guide 
Ann & Robert H. Lurie Children’s Hospital   
    Page 1 
Pediatric Intensive Care Unit & Cardiac Intensive Care Unit 
 
Glossary of Terms – cont. 
 
Parking: Parking at the Huron-Superior garage costs $10 for less than 7 hours 
and $15 for 7 to 24 hours, with a validated ticket (costs are higher if the ticket 
is not validated by the hospital).  Tickets can be validated at the second floor 
concierge desk in Lurie Children’s before you leave for the garage. The Erie-
Ontario garage, a few blocks away, is another option. For extended stays,
please ask your nurse or social worker about additional options. 
Visiting Hours: For parents or guardians, visitation is available 24 hours. For 
all other visitors, visitation is from 10:00 AM to 8:30 PM - Limit 3 people at 
one time. 
Isolation and Visitor Restrictions: Our patients are vulnerable, even a 
common cold could make them very ill. To help protect them, during the 
winter no visitors under the age of 14 are allowed, and only two people at a 
time may be in your child’s room. No one who feels sick should visit. If your 
child has symptoms of a virus, you will be asked to wear a gown, gloves and a 
mask when you are in the room. Please remember to wash your hands when 
entering and leaving your child’s room. 
Sleep: Parents may stay with their child 24/7. If you live far away and your 
child will be hospitalized for a while, please ask your nurse or social worker 
for information about rooms that may be available to you. It is important for 
parents to take time to sleep, eat and get fresh air.  You can ask your 
nurse to let you know when it would be a good time to do these things. 
Flowers are not allowed in the PICU or CICU. 
General Information 
Ann & Robert H. Lurie Children’s Hospital  
       Page 4 
Pediatric Intensive Care Unit & Cardiac Intensive Care Unit
This brochure has some basic information that we hope will 
be helpful while your child is in the PICU or CICU. 
We recognize that this can be a very stressful time for you, 
your child, and your family. Please ask any questions you 
might have, and ask as many times as you need. We are here 
to help! 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Below are some words that you MIGHT hear in the PICU 
or CICU. NOT all of these words/situations will apply to 
your child. 
Blood gas: Blood test that measures the amounts of oxygen and 
carbon dioxide in a patient’s blood. 
CPR (cardiopulmonary resuscitation): A procedure to try to restart 
the heart if a patient has a cardiac arrest—that is, if the patient’s 
heart and breathing stop. This procedure combines pressing on the 
chest, giving rescue breathing and administering medications and 
sometimes electric shocks. 
Cardiac monitor: Screen that shows your child’s vital signs (heart 
rate, blood pressure, oxygen levels, breathing rate). Your child will 
be connected to this monitor by several wires and cables. 
Catheter (tube, line, drain): Plastic tube placed in a blood vessel 
(vein or artery) or another part of the body (such as a bladder 
catheter to drain urine). 
Procedures 
Certain procedures may need to be performed in order to help your 
child get better (for example, intubation, central line placement – 
see glossary). Unless it is an emergency, we will take the time to 
explain all procedures to you and ask your permission to proceed. If 
a procedure needs to be performed emergently, there will be people 
available to explain what is happening and answer your questions. 
The PICU/CICU Team  
The PICU/CICU team does “rounds” on patients every morning 
between 8 am and noon. “Rounds” are a time to review how your child 
is doing and discuss treatment plans for the day. You are a very 
important part of your child’s care team and will be invited to 
participate in rounds. 
x Advanced Practice Nurses (APNs) are nurses with additional
education and training who work collaboratively within the healthcare 
team to manage critically ill infants and children. 
x Case Managers serve as the link between the hospital and your 
insurance plan, and help coordinate your child’s discharge or transfer. 
x Chaplains provide support for you and your child. They are trained to 
work with people of all faiths and can help to connect you with 
resources from your religious tradition  
x Child-life specialists help your child cope with being in the
PICU/CICU. They are experts in child development and can also help 
with siblings or other young family members.  
x Dietitians help manage your child’s nutrition, including IV feedings. 
x Medical students, residents, and fellows are doctors in various stages
of training. 
x Nurses in the PICU/CICU have been specially trained to care for 
critically ill children. 
x Pharmacists monitor all medicines and dosages during the course of 
your child’s illness.  
x Respiratory (breathing) therapists (RTs) use oxygen and other 
therapies to help children who have trouble breathing.  
x Physical, occupational, and speech therapists focus on increasing
your child’s strength, flexibility, and function, and reducing risk during 
activities such as swallowing or transferring out of bed. 
x Physicians (doctors): Several teams of doctors may be caring for your 
child, including PICU/CICU specialists (intensivists), surgeons, and 
other specialists. An attending physician heads each team.  
x Social workers support and guide you to resources as needed during 
your child’s stay in the PICU/CICU. 
Ann & Robert H. Lurie Children’s Hospital  
       Page 3 
Pediatric Intensive Care Unit & Cardiac Intensive Care Unit 
 
Ann & Robert H. Lurie Children’s Hospital   
        Page 2 
Pediatric Intensive Care Unit & Cardiac Intensive Care Unit 
 
Glossary of Terms  
What Can I Do To Help? 
Work with you nurse to understand how to interact with your 
child if you are unsure during the course of their treatment.  Your 
nurse can also guide you in maintaining safety when helping your 
child with bathing, feeding, diapering, and other care. We 
encourage you to bring in favorite toys or blankets to make your 
child feel more comfortable. You can also bring pictures of your 
child to help the PICU/CICU staff see your child the way you do. 
Please ask questions as many times as needed for you to feel 
comfortable.  Your child’s care team understands that being in 
the PICU/CICU can be stressful and that you may not remember 
everything the first time you hear it. Consider writing down the 
names of your child’s PICU/CICU team members and their roles. 
If you think of questions when the doctors or APNS are not 
around, ask your child’s nurse, or write them down to ask later. 
Clinical Research 
Part of our mission is to use research to find better ways to take care of
children and their families. If your child qualifies, you may be asked for 
permission to include your child in one of our current studies. 
Participation is voluntary (optional), and if you decide not to participate it 
will not affect your child’s care. 

 
 
NO todas estas palabras/situaciones se aplicarán al caso de su hijo/a.  
Línea central (intrayugular, línea femoral, subclavia):  Un catéter intravenoso especial que 
se le coloca en una vena grande (usualmente cerca del cuello o la ingle) para administrar 
líquidos, medicamentos o nutrición y para extraer muestras de sangre para pruebas de 
laboratorio.  
Terapia de reemplazo renal continua (CRRT, por sus siglas en inglés):  Una forma  de 
diálisis temporal que corre continuamente.  La CRRT puede remover toxinas y líquidos en 
exceso del cuerpo.  
Desfibrilador:  Una máquina que emite un choque eléctrico para intentar restaurar un ritmo 
cardíaco anormal.  
ONR/ONIR (Orden de no reanimar/Orden de no intentar reanimación, o DNAR/DNR 
por sus siglas en inglés): Una orden que instruye a los médicos y enfermeros a no realizar 
RPC si el/la paciente deja de respirar o si su corazón se detiene.   Una ONIR SOLAMENTE 
se implementa después de una conversación con los padres y su acuerdo.  Una ONIR/ONR 
NO significa que se le vaya a quitar otros tratamientos.    
ECG (electrocardiograma, o EKG, por sus siglas en inglés): Un trazado de las señales 
eléctricas del corazón.  
Tubo endotraqueal:  Un tubo que se coloca en la vía respiratoria (tráquea) por la boca o la 
nariz y conectada a un respirador mecánico para ayudarle al paciente respirar.  
Extubación:  El proceso de remover el tubo endotraqueal del paciente.  
Sonda gástrica (G-tube):  Una sonda de alimentación que se coloca directamente de la 
superficie de la panza al interior del estómago mediante intervención quirúrgica. 
Intubación:  El proceso de colocar un tubo endotraqueal cuando el/la paciente  no puede 
respirar por sí solo/a y necesita un respirador mecánico.    
Ventilador (respirador) mecánico: Una máquina que se usa para ayudarle al paciente 
respirar.   
Cánula nasal:  Tubo plástico que cabe alrededor de la cabeza con dos puntas cortas en las 
fosas nasales.  Le suple oxígeno al paciente (de un tanque o una fuente de la pared).  
Sonda nasogástrica (NGT, NG), sonda orogástrica (OGT, OG):  Tubo que se introduce 
desde la nariz o la boca y que llega hasta el estómago. Se utiliza para administrar 
medicamentos y alimentaciones o para drenar los contenidos del estómago.   
Atención paliativa:  Atención que se enfoca en reducir el dolor o malestar y aumentar la 
calidad de vida.  
Pulsioxímetro:  Un dispositivo que mide la cantidad de oxígeno que lleva la sangre.   
Sedación:  Medicamentos para poner a los pacientes somnolientos, relajados y menos 
conscientes de condiciones incómodas o angustiantes.  
Medicamentos vasoactivos (inotropos, presores, sueros): medicamentos que se administran 
de manera continua para subir o bajar la presión sanguínea y brindar apoyo al corazón.  
Unidad de Cuidado Intensivo Pediátrico ("PICU") 
& 
Unidad de Cuidado Cardiaco Intensivo (“CICU”) 
Guía para los padres 
Ann & Robert H. Lurie Children’s Hospital   
    Página 1 
Unidad de Cuidados Intensivos Pediátricos & Unidad de Cuidado Cardiaco
Intensivo 
 
Términos de Glosario - 
 
Estacionamiento: El estacionamiento en el garaje de la Huron y la Superior cuesta $10 por 
menos de 7 horas y $15 por entre 7 y 24 horas, con un boleto validado (los costes son 
mayores si el boleto no se valida por el hospital).   Los boletos se pueden validar por los 
conserjes en la recepción del segundo piso en Lurie Children's antes de dirigirse hacia el 
garaje.  Otra opción es el garaje de la Erie y la Ontario, unas cuadras del hospital.  Para 
estadías extendidas, pida a su enfermero(a) o trabajador(a) social acerca de opciones 
adicionales.  
Horas de visita: Para los padres o tutores, visitación está disponible las 24 horas.  Para 
todos los de más visitantes, las horas de visita son desde las 10:00 AM hasta las 8:00 PM - 
Con un límite de 3 personas a la vez.  
Aislamiento y restricciones de visitantes: Nuestros pacientes son vulnerables, hasta un 
resfriado común podría causar que se enfermen gravemente. Para ayudar a protegerlos, 
durante el invierno, no se permiten ningunos visitantes menores de la edad de 14 años, y 
solamente dos personas pueden estar en la habitación de su hijo o hija a la vez.  Nadie que 
se siente enfermo debe visitar.  Si su hijo o hija presenta síntomas de un virus, se le pedirá 
que usted se ponga una bata, guantes y una máscara cuando esté en su habitación.  Favor de 
recordarse de siempre lavarse las manos al entrar y al salir de la habitación de su hijo o hija. 
Dormir: Los padres pueden quedarse con su hijo o hija las 24 horas del día, los 7 días de la 
semana. Si viven lejos y su hijo estará hospitalizado/a por un tiempo, pídale información de 
su enfermero(a) o trabajador(a) social  acerca de habitaciones que pueden estar disponibles 
para usted.  Es importante que los padres tomen su tiempo para dormir, comer y salir 
al aire libre.   Puede pedir que su enfermero(a) le deje saber cuándo sería buen 
momento para hacer estas cosas. 
No se permiten flores en la PICU o CICU. 
Información General 
Ann & Robert H. Lurie Children’s Hospital  
Página  4 
Unidad de Cuidados Intensivos Pediátricos & Unidad de Cuidado 
Cardiaco Intensivo 
Este folleto contiene información básica que esperamos  le sea 
de utilidad mientras su hijo o hija esté en la PICU/CICU.  
Reconocemos que esto puede ser un momento de mucho estrés 
para usted, su hijo o hija y su familia.  Por favor háganos 
cualquier proyecto que pueda tener y hágala las veces que 
necesite.  ¡Estamos aquí para ayudar!  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
A continuación hay algunas palabras que QUIZÁS escuchará en 
la PICU/CICU.  NO todas estas palabras/situaciones se aplicarán 
al caso de su hijo/a.  
Gasometría arterial:  Una prueba de la sangre que mide la cantidad de 
oxígeno y dióxido de carbono en la sangre del/ de la paciente.  
RCP (resucitación cardiopulmonar): Un procedimiento para intentar 
reanimar el corazón si el/la paciente sufre un paro cardíaco--o sea, si el 
corazón y la respiración del/de la paciente se detienen.  Este procedimiento 
combina la presión sobre el pecho, la respiración de rescate y la 
administración medicamentos y a veces choques eléctricos.  
Monitor cardíaco: Una pantalla que demuestra los signos vitales de su hijo 
o hija (ritmo cardíaco, presión sanguínea, niveles de oxígeno y frecuencia 
respiratoria).  A su hijo o hija se le conectará a este monitor por medio de 
varios alambres y cables.  
Catéter (sonda, tubo, línea, drenaje): Un tubo plástico que se coloca en 
un vaso sanguíneo (vena o arteria) u otra parte del cuerpo (tal como un 
catéter de la vejiga para el drenaje de orina).  
Procedimientos 
Puede que ciertos procedimientos tengan que realizarse para ayudar a su 
hijo o hija a mejorarse (por ejemplo, la intubación, la colocación de un 
catéter central - véase el glosario.  A menos que sea una emergencia, 
tomaremos el tiempo de explicarle todos los procedimientos y pedir  su 
permiso de proceder.  Si un procedimiento tiene que realizarse 
urgentemente, habrá personas disponibles para explicar lo que esté pasando 
y contestar sus preguntas.  
El Equipo de la PICU/CICU  
El equipo de la PICU/ CICU hace "rondas" sobre los pacientes cada mañana 
entre las 8 a.m. y el mediodía.  Las "rondas" son un tiempo para revisar cómo 
le va a su hijo/a y discutir planes de tratamiento para el día.  Usted es una parte 
muy importante del equipo de atención médica de su hijo o hija y se le invitará 
a participar en las rondas.  
x Los enfermeros de práctica avanzada (APN) son enfermeros con educación y 
capacitación adicional que trabajan de manera colaborativa como parte del 
equipo de atención médica para manejar a los lactantes y niños críticamente 
enfermos.  
x Los manejadores de casos sirven como un enlace entre el hospital y su plan de
seguro médico, y ayudan a coordinar el alta o traslado de su hijo o hija. 
x Los capellanes brindan apoyo para usted y su hijo o hija.   Se han adiestrado 
para trabajar con personas de todas las creencias religiosas y pueden ayudarle a 
conectarse con recursos de su tradición religiosa.   
x Los especialistas de vida infantil ayudan a su hijo o hija a lidiar con estar en la 
PICU/CICU.  Son expertos en el desarrollo infantil y también pueden ayudar 
con los hermanos u otros familiares jóvenes.   
x Los dietistas ayudan a manejar la nutrición de su hijo o hija, inclusive las 
alimentaciones por vía intravenosa.  
x Los estudiantes médicos, los residentes y los médicos becarios son médicos
que se encuentran en diferentes etapas de adiestramiento.  
x Los enfermeros en la PICU/CICU se han adiestrado especialmente para cuidar 
a los niños críticamente enfermos. 
x Los farmacéuticos monitorean todos los medicamentos y las dosis durante el 
transcurso de la enfermedad de su hijo o hija.    
x Los terapeutas respiratorios (RT) usan la terapia de oxígeno y otras terapias 
para ayudar a los niños que presentan dificultad respiratoria.   
x Los terapeutas físicos, ocupacionales y del habla se enfocan en aumentar la
fuerza, la flexibilidad y función de su hijo o hija y en reducir el riesgo durante
actividades tales como la deglución o el levantarse de la cama.  
x Médicos (doctores):  Varios equipos de médicos pueden estar cuidando a su 
hijo o hija, inclusive el de los especialistas (intensivistas) de la PICU/CICU,
cirujanos y otros especialistas.  Un(a) médico(a) adjunto(a) encabeza cada 
equipo.   
x Los trabajadores sociales le apoyan y guían a los recursos según se necesiten 
durante la estadía de su hijo o hija en la PICU/CICU.  
Ann & Robert H. Lurie Children’s Hospital  
Página  3 
Unidad de Cuidados Intensivos Pediátricos & Unidad de Cuidado
Cardiaco Intensivo 
Ann & Robert H. Lurie Children’s Hospital  
Página  2 
Unidad de Cuidados Intensivos Pediátricos & Unidad de Cuidado
Cardiaco Intensivo 
Glosario de términos  
¿Qué puedo hacer para ayudar? 
Consulte con su enfermero(a) para entender cómo interactuar con su hijo 
o hija a lo largo de su tratamiento.   Su enfermero(a) también puede 
orientarle respecto al mantenimiento de seguridad al ayudar a su hijo a 
bañarse, alimentarse, cambiarle el pañal y otros cuidados.  Le animamos 
a traer los juguetes favoritos o frisas para hacerle sentir más cómodo(a) a 
su hijo o hija.  También puedes traer fotos de su hijo o hija para ayudar a 
los empleados del PICU/CICU a ver a su hijo o hija de la misma manera 
que usted.  
Por favor haga preguntas cuántas veces necesite para que se siente 
más cómodo(a).   El equipo de atención médica de su hijo o hija 
entiende que estar en la PICU/CICU puede ser estresante y que puede 
que no recuerde todo la primera vez que lo escuche.  Considere apuntar 
los nombres de los miembros del equipo de la PICU/CICU de su hijo o 
hija y sus roles.  Si se le ocurren preguntas cuando los médicos o los 
APN (enfermeros(as) especializados) no estén, pregunte al/ a la 
enfermero(a) de su hijo o hija, o apúntelas y pregunte después.
Investigación clínica  
Parte de nuestra misión es de utilizar la investigación para encontrar mejores 
maneras de cuidar a los niños y sus familias.  Si su hijo/a reúne los requisitos, es 
posible que solicitemos su autorización para incluirlo/la en uno de nuestros 
estudios actuales.  La participación es voluntaria (opcional), y si decide no 
participar, ello no afectará la atención médica de su hijo/a.  

 
Dear Colleague, 
 
I am writing to you to ask for your participation in a short survey as a part of a research study called, 
“The Navigate Study” funded by the Patient-Centered Outcomes Research Institute.   
 
You recently participated in the care of XX  (initials) who was in bed 16- ____ and admitted to the PICU 
with XX (indication for admission to the PICU).  This patient/family was enrolled in The Navigate Study 
and received the intervention called PICU Supports.   I am interested to know your opinion of the PICU 
Supports intervention used during the care of XX  (initials) and the impact of the PICU Supports 
intervention on communication in the PICU.  If you need additional information to identify this patient, 
please contact Laura Campbell (lacampbell@luriechildrens.org).  
 
This survey will take about 10 minutes to complete. 
 
For more information about this study please feel free to contact me, or visit ClinicalTrials.gov 
 
To participate in this study please click on the link below 
 
Thank you in advance for your participation. 
 
Sincerely,  
Kelly Michelson, MD 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
Thank you for helping us learn more about communication in the 
pediatric intensive care unit (PICU) and cardiac intensive care unit 
(CICU). This survey asks questions about the family meeting you 
participated in for a family enrolled in the Navigate Study.  Please 
complete this survey and return it in the envelope provided. 
 
Healthcare Team Post Family Meeting 
Survey  
This survey takes approximately 10-15 minutes to complete 
 
Today’s date is:  
 
 
 
 
 
 
Month XX 
Day XX 
Year XXXX 

 
 
 
 
Page 2  
 
Version Date:  
Participant ID: 
 
Research Study Title: Improving Communication in the PICU for Patients Facing Life-Changing 
Decisions: the Navigate Study 
From: Ann & Robert H. Lurie Children’s Hospital of Chicago 
Principle Investigator: Kelly Michelson, MD, MPH, email: kmichelson@luriechildrens.org,             
telephone: 312-227-1606 
Sponsor: Patient-Centered Outcomes Research Institute (PCORI) 
The purpose of this study is to understand and support better communication in the pediatric intensive 
care unit (PICU) and cardiac intensive care unit (CICU) between parents of critically ill children and the 
healthcare team and among the healthcare team. The study will determine the benefits or lack of 
benefits of a program called “PICU Supports,” an intervention dedicated to supporting communication. 
We are doing this study because we think that the PICU Supports program may improve patient and 
family experiences, particularly when parents of PICU/CICU patients are involved in making difficult 
decisions for their child. You are being asked to complete this survey because you are a healthcare 
provider who participated in an organized family meeting for a patient enrolled in the Navigate Study. 
We are interested in your views about communication between healthcare team members and the 
family during the family meeting. 
This survey asks questions about views on communication during a patient’s family meeting. It should 
take no more than 10 minutes to complete. 
By completing this survey you are agreeing to participate in the research study. Participation is 
completely voluntary: you do not have to participate. You may also skip any question you do not wish 
to answer. Your choice about participation will not change any present or future relationships with 
Lurie Children's Hospital. 
There are no anticipated benefits to participants. There will be no costs to you for participating in this 
research study. This study has minimal risk to you.   The only risk is that someone outside of the 
study team may become aware of your participation.  The study team will do everything possible to 
keep your information confidential.  Your name or e-mail address will not be linked to your responses. 
Only a study ID number generated by REDCap (the online data entry system) will be linked to your 
responses.  Your contact information will be stored in a password protected file and will not be 
disclosed to anyone outside of the research team.  
If you have any questions, please contact Dr. Kelly Michelson (Principle Investigator) at ext. 71606 or 
Ms. Laura Campbell (Research Coordinator) at ext. 71618, or visit Clinical Trials.gov 
 
Please read the instructions prior to answering the questions. 
Thank you for helping us know more about communication in the PICU/CICU!! 
 
 
 

 
 
 
 
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Communication is a very important part of quality medical care.  We would like to know how you 
feel about the way the healthcare team communicated with the patient’s family during the family 
meeting.  Your answers are completely confidential, so please be as open and honest as you 
can. Thank you very much. 
Please respond to each statement by marking and “X” in one box per row. 
The healthcare team… 
 
Poor 
Fair 
Good 
Very 
Good 
Excellent 
1. Greeted the family in a way that made them 
feel comfortable. 
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2. Treated the family with respect. 
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3. Showed interest in the family’s ideas about 
their child's health. 
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4. Understood the family’s main health 
concerns for their child. 
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5. Paid attention to the family (looked at them, 
listened carefully). 
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6. Let the family talk without interruptions. 
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7. Gave the family as much information as 
they wanted. 
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8. Talked in terms the family could 
understand. 
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9. Checked to be sure the family understood 
everything 
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10. Encouraged the family to ask questions. 
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11. Involved the family in decisions as much as 
they wanted. 
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12. Discussed next steps, including any follow 
up plans. 
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13. Showed care and concern. 
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14. Spent the right amount of time with the 
family. 
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Please continue on the next page  
 

 
 
 
 
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Please mark an “X” in the box next to the answer that best describes you, and/or fill in the blank. 
 
1. What is your sex?      Female      Male   
 
    
2. What year were you born in? _____________ 
 
 
 
      Year XXXX                        
 
3. What is your position at the hospital?  
 Advanced Practice Nurse  
Please indicate your specialty _________________________ 
 Attending Physician 
Please indicate your specialty _________________________ 
 Chaplain 
 Child-life Specialist 
 Fellow Physician 
Please indicate your specialty _________________________ 
 PICU Hospitalist 
 Resident Physician  
Please indicate your specialty _________________________ 
 Staff Nurse 
 Social Worker 
 Other ____________________________________________(describe) 
 
 
4. How many years have you been in your current position? ____________ 
 
5. What racial category best describes you? (select all that apply) 
 
 American Indian / Alaska Native  
 Asian 
 Black / African American 
 Native Hawaiian  or Other Pacific Islander 
 White 
 Other ____________________________________________(describe) 
 
 
6. What ethnic group best describes you? 
 Hispanic or Latino 
 Not Hispanic or Latino