ICU Experience Among Family Members of ICU Patients
Phase: NA
Conditions: Post-Traumatic Growth, Psychological
Sponsor: Intermountain Health Care, Inc.

 
 
 
Official Title: ICU experience among family 
members of ICU patients 
 
 
NCT #: NCT02940028 
 
 
Document Date: May 28 2020 

ICU Experience Among Family Members 
 
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Protocol 
 
Title: 
 
ICU experience among Family Members of ICU Patients 
Location of Research:  
 
Intermountain Medical Center 
Principal Investigator: 
 
Ramona O. Hopkins, PhD 
 
Sponsor: 
 
Intermountain Research and Medical Foundation 
 
Study Team: 
 
Samuel M. Brown, MD 
Jorie Butler, PhD 
Ellie Hirshberg, MD 
Sarah Beesley, MD 
James Orme, MD 
Tom Oniki, PhD 
Danielle Groat, PhD 
 
Purpose of the Study: 
The purpose of this study is to investigate whether an expressive writing intervention increases post- 
traumatic growth (PTG) in family members of patients admitted to the ICU with a serious illness and 
explore the association between coping phenotypes and PTG. PTG will be compared between the 
intervention group receiving the expressive writing intervention and the control group (non-expressive 
or fact-based writing). The primary outcome will be PTG at 12 weeks, with secondary outcomes of 
depression, anxiety and posttraumatic stress disorder (PTSD) at follow up. 
 
Hypothesis/Research Questions: 
In two hypotheses evaluated in two specific aims, we will investigate whether an expressive writing 
intervention increases PTG in family members of patients admitted to the ICU with a serious illness and 
explore the association between coping phenotypes and PTG. PTG will be compared between the 
intervention group receiving the expressive writing intervention and the control group (non-expressive 
or fact-based writing). The primary outcome will be PTG at 16 weeks, with secondary outcomes of 
depression, anxiety and PTSD at follow up. 
 
Specific Aim 1: Examine the association between participating in an expressive writing intervention 
and development of post-traumatic growth. 
Primary outcome: Post-Traumatic Growth Inventory at 4 months 
Secondary outcomes: Impact of Events Scale-Revised (IESR), Hospital Anxiety and Depression 
Inventory (HADS) at 4 months 
 
Hypothesis 1a: Participants in the intervention group will have higher levels of post-traumatic growth 
at follow-up than participants in the control group. 
 

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Hypothesis 1b: Participants in the intervention group will have lower PTSD, depression, and anxiety 
scores at 4 months. 
 
Specific Aim 2: Explore whether individual coping phenotypes predict PTG. Predictors for consideration 
include acute perceived stress (Perceived Stress Scale-4 [PSS-4], personality characteristics (Big Five 
Inventory [BFI]) coping ability (Brief COPE), social relationship quality (Social Relationship Inventory 
(SRI abbreviated), measures of disability in activities of daily living and instrumental activities of daily 
living caregiver burden (Groningen Activity Restriction [GARS] Scale), patient age and severity of illness 
(APACHE score). 
 
Hypothesis 2a: ICU families coping phenotypes (stress, personality characteristics, and coping) will be 
associated with PTG. 
 
Hypothesis 2b: Other variables related to the ICU (APACHE IV score, age, sex, ethnicity, whether the 
patient dies before follow-up) and post-ICU (care giver burden) experience will be associated with PTG 
at 3 mos. 
 
Background and Significance: 
Post-ICU psychological distress is common and important 
The intensive care unit (ICU) is a stressful and challenging place for patients and their families, who 
must navigate illness and its associated discomforts as well as complex decision making in an 
environment characterized by tremendous uncertainty1-3. Negative emotions including stress, fear, 
anger, and fatigue are extremely common during an ICU admission4,5. Many family members 
experience anxiety, depression, and posttraumatic stress disorder (PTSD) during and after the ICU 
experience that persists years after their loved one is discharged from the ICU3,6-8. 
 
During an ICU stay, it is common for patients to be too ill to participate in decision making in the ICU9 – 
and medical decision making will generally be made by the family members designated surrogate 
decision makers7. Surrogate medical decision making may be intense and stressful and may contribute 
to development of anxiety, depression and posttraumatic stress disorder (PTSD) in family members 3. 
 
Persistent psychological distress after ICU admission is part of a recognized syndrome called post-
intensive care syndrome-Family (PICS-F)10. The reasons for PICS-F in response to the emotional trauma 
of the ICU are multifactorial, and include pre-existing risk factors, failures to meet informational needs, 
threat of death or serious disability, and decision-related stress, given the heavy psychological burden 
associated with decision making about matters of life and death1,3. Traumatic experiences, however, 
can also result in positive psychological outcomes – including better relationships, improvements in 
spiritual well-being, greater self-efficacy, and personal development. Such positive post-trauma 
outcomes are known as post-traumatic growth (PTG)11 and may represent an alternative to the PTSD 
and anxiety that have come to the hallmark of PICS-F. 
 

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Post-traumatic growth 
Post-traumatic growth is a positive change in a person’s sense of self that is part of a complex narrative 
or personal life story that occurs after a difficult life experience. An individuals’ world view with the 
accompanying goals, beliefs, and habits of managing emotional feelings and stress can be shaken by 
traumatic experiences and then, over time, are rebuilt into a new positive view of the self and life11-13. 
Post-traumatic growth (PTG) has been observed in response to a wide variety of traumatic experiences 
including medical illnesses (chronic illness, cancer, AIDS), military combat, man-made disasters (e.g., 
shootings) and natural disasters (e.g., tornadoes)14,15. Patterns of PTG vary based on aspects of the 
trauma and the individual’s characteristics. Some evidence suggests that the traumatic events 
associated with the greatest PTG represent intermediate levels of harm. Personal characteristics 
associated with PTG, include openness, extraversion, agreeableness and conscientiousness 
alternatively neuroticism is associated with less PTG. Greater PTG is associated with -focused coping 
and cognitive processing of the traumatic event, involvement in religious activities and high levels of 
perceived social support15-17. Overall, some degree of emotional processing of the traumatic event 
must take place for PTG to occur,12 and such processing is most likely to result in post-traumatic growth 
in a particular personal and social context. 
 
Post traumatic growth takes time to emerge, with most positive changes occurring within 2 months 
after the trauma18 while the level of PTG remains stable 3 to 8 years following the trauma19,20. 
 
Potential Benefits of Expressive Writing 
Although PTG is a naturally occurring process, deliberate interventions can increase its likelihood. 
Some interventions are time-consuming and expensive – such as cognitive behavioral therapy. But, in 
some contexts, interventions centered on a specific type of journaling known as “expressive writing” 
have increased PTG. Semi-structured expressive writing was developed by James Pennebaker, Ph.D. as 
a structured technique for recording deep thoughts and feelings about a traumatic event in a 
structured setting 21. Expressive writing facilitates coping with trauma by helping people process – 
emotionally and cognitively – a traumatic event. Participating in expressive writing – commonly three 
20-minute sessions on three consecutive days – includes writing about emotions and thoughts 
associated with the traumatic event. Variations include providing participants with a journal and asking 
them to complete the writing at set times at home22 or using an internet-based journal23. In many 
studies expressive writing interventions are associated with improved outcomes including fewer 
reports of physical symptoms, a reduction in PTSD and greater PTG22-24. In addition, expressive writing 
is associated with reduced healthcare utilization, fewer physical symptoms, and fewer PTSD symptoms 
on follow-up21,22,25. 
 
Family members and patients enter the ICU with unique characteristics that may affect their risk for 
psychological distress26. In other trauma-exposed populations, individual attributes have been 
associated with development of PTSD26,27. Personalizing the experience of family members by offering 
post-ICU support strategies, such as writing interventions, may decrease psychological distress and 
improve positive outcomes and PTG11,28. 
 

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In prior work, we identified ICU family member coping phenotypes that would identify individual 
attributes, preferences, and vulnerabilities (personality dimensions, shared decision-making 
preferences, coping styles, and social support) that might be relevant to the experience of ICU 
surrogates29. We identified three copying phenotypes including adaptive copers, maladaptive copers, 
and disengaged copers. Coping phenotypes differed primarily on coping styles, personality, quality of 
their closest social relationship, and history of anxiety and depression.29 Early work suggests that 
individuals in certain coping phenotypes may have different approaches to surrogate decision making 
and different satisfaction with the shared decision making during a simulated ICU experience. They 
may also have different probabilities of PTG. 
 
Research Subjects: 
Inclusion Criteria: 
Family members of ICU patients are eligible for the study. We will enroll one study participant per 
patient admitted to a study ICU (Shock Trauma or Respiratory ICU at Intermountain Medical Center) 
who meets the following inclusion criteria: 
 Participant can be a family member of a patient admitted to a study ICU for >24 hours and >1 
of the following: 
• mechanical ventilation via endotracheal tube for ≥ 12 hours 
• non-invasive ventilation (CPAP, BiPAP) for > 4 hours in a 24-hour period 
provided for acute respiratory failure in an ICU (not for obstructive sleep 
apnea or other stable use) 
• high flow nasal cannula or face mask O2 with FiO2 ≥ 0.5 for ≥4 hours 
• use of vasopressors for shock of any etiology for >1 hour 
 The priority for enrollment is outlined in the picture below. 
 
 Both participant and ICU patient must be adult (age ≥18 years of age) 
 Participant must be able to read, speak, and write in English 
 Participant must be enrolled within 72 hours of the patient’s meeting mechanical ventilation 
criteria. 
 
Participants who live with the patient will be accorded higher priority than those who do not live with 
the patient because they are more likely to be involved as caregivers. The preference would be for the 

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participant to be the designated power of attorney; if there is no designated power of attorney living 
with the patient, then the primary informal caregiver (identified either by the patient or by the family) 
would be enrolled; if either of these is not available, the default surrogate (defined in figure 1) would 
be enrolled. If no one living with the patient meets these criteria, then family members and informal 
caregivers not living with the patient will be screened for the study. The preference would again be for 
first, the designated power of attorney, then a primary caregiver and a default surrogate. An informal 
caregiver provides care without reimbursement. 
 
Participant Exclusion Criteria: 
 Pregnant or breastfeeding females 
 Prisoners 
 Children (age <18 years of age) 
 Known history of PTSD, dementia, or schizophrenia. Presence of these illnesses will be per 
participant report of physician diagnosis and treatment 
 If a patient has been transferred from another ICU after an ICU course greater than 24 hours, 
or if the patient has had a previous ICU or long-term acute care (LTAC) admission in the last 90 
days, the family member or caregiver will be excluded. 
 Patients admitted for hospice 
 Participants who live more than 200 miles away or who have no specified domicile 
 Non-English speaking 
 
Because ICUs are sometimes used for simple monitoring of patients with low severity of illness and 
that experience is likely to be quite different from an admission for critical illness, we restrict to 
patients with at least a moderate severity of illness as judged by >48 hours of mechanical ventilation. 
We exclude participants who have underlying mental disease such as PTSD, dementia, and 
schizophrenia because these participants may process trauma-related information very differently 
from other participants. The intervention features expressive writing so understanding, speaking, and 
writing in English is critical as we will not have the capacity to conduct data analysis of the writing 
sample in other languages. We are most interested in subjects who have experienced acute stress at 
an identifiable time (during the ICU admission) thus family members who have already been in ICU or 
in other critical care environments may not be undergoing acute stress. 
 
Recruitment: 
Qualified study participants will be consented prior to commencing any research-related activity. These 
individuals will be approached in the patient’s room or waiting room in the ICU or by telephone. 
Methods/Procedures: Baseline Assessment 
Participants will be enrolled in the study if they meet study inclusion and no exclusion criteria and 
signed informed consent. Participants will be administered baseline questionnaires, randomly assigned 
to the intervention or control condition, participate in intervention or control writing condition at 4 
weeks (range 2 to 8 weeks) after enrollment, and administered follow-up questionnaires at three 
months after the writing intervention (± 2 weeks) by telephone. 
 

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Questionnaires 
Participants will complete baseline questionnaires including32, PSS-4, BFI, Brief COPE, HADS and the 
IESR. 
 
Table 1. Questionnaires administered at study enrollment 
Instrument 
Measures 
Scale 
Scoring 
Hospital Depression 
and Anxiety Scale 
 Depression and anxiety 
14 items (7 each for 
anxiety and 
depression). Items 
scored 0 to 3. Total 
scores for each scale 
range from 0 to 21. 
Scores of 8 or 
higher indicate 
symptoms or 
depression or 
anxiety.33 
Impact of Event Scale 
Revised (IES-R) 
Screens for PTSD 
22-item scale 
measuring intrusion, 
avoidance and 
hyperarousal; each 
item scored from 0-4 
A mean score of ≥ 
1.6 indicates PTSD 
symptoms.34,35 
Perceived Stress Scale 
Feelings of stress 
4 items with scores 
that range from 0 to 
4 
Higher scores 
indicate greater 
stress.36,37 
Brief COPE 
Coping with stress 
14 dimensions with 2 
questions per 
dimension 
Higher scores 
indicated greater 
use of a given 
coping strategy.38 
Social Relationship 
Inventory (abbreviated) 
Quality of Social Support 
3 dimensions of 
relationship for the 
person closest to 
the respondent, 
helpfulness, upset, 
and unpredictability 
rated from 1 (not at 
all) to 6 (extremely) 
Higher scores on 
each dimension 
indicate greater 
helpfulness, upset, 
and unpredictability. 
Big Five Inventory 
Personality dimensions: 
openness to new experiences, 
conscientiousness, extra 
version, agreeableness and 
neuroticism. 
10 items 
Higher scores 
indicate greater 
degree of a specific 
personality 
characteristic.39 
 
Random Assignment and Intervention 
Random assignment to condition will be completed using random number generator. Participants will 
receive instructions for participating in the intervention. 
 
The intervention will take place in person at 4 weeks (± 2 to 8 weeks). Participants will participate in a 
semi-structured 20-minute expressive writing session in person or at home with instructions. For those 
in the experimental expressive writing condition, the instructions (adapted from Stanton & Danoff-
Burg)24 will be: 

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“What I would like you to write about for these three sessions are your deepest thoughts and feelings 
about your experience with your family member in the Intensive Care Unit (ICU). I realize that people 
with a loved one in the ICU experience a full range of emotions and thoughts, and I want you to focus 
on any and all of them. In your writing, I want you to really let go and explore your very deepest 
emotions and thoughts. You might think about all the various feelings and changes that you 
experienced before your loved one was hospitalized in the ICU, after the diagnosis that led them to the 
ICU, during treatment, and now. Whatever you choose to write, it is critical that you really focus on 
your deepest thoughts and feelings. Ideally, I would like you to focus on feelings, thoughts, or changes 
that you have not discussed in great detail with others-private feelings. You might also tie your 
thoughts and feelings about your experiences with having your loved one in the ICU to other parts of 
your life, i.e., your childhood, people you love (this loved one and others), who you are, or who you 
want to be. Again, the most important part of your writing is that you really focus on your deepest 
emotions and thoughts. The only rule we have is that you write continuously for the entire time. If you 
run out of things to say, just repeat what you have already written. Don’t worry about grammar, 
spelling, or sentence structure. Don’t worry about erasing or crossing things out. Just write.” 
 
Participants in the control condition will receive the following instructions: 
 
“What I would like you to write about for these three sessions are all the facts about your experience 
with your family member in the Intensive Care Unit (ICU). We are not interested in your thoughts and 
emotions. Please do not include them. We are interested in all the facts about how your loved one came 
to the ICU and the facts about your experiences in the ICU with your loved one. The only rule we have is 
that you write continuously for the entire time. If you run out of things to say, just repeat what you 
have already written. Don’t worry about grammar, spelling, or sentence structure. Don’t worry about 
erasing or crossing things out. Just write.” 
 
Participants will write for 20 minutes for 3 sessions that will occur over a 2-hour period on the 
participation day (8 weeks after the hospitalization). Participants who are comfortable typing will type 
responses into a REDCap website via a tablet and keyboard which will measure the amount of time 
spent writing or at home on their computer and will email the writing sample to the study coordinator. 
 
Participants who use handwriting will be observed by the project coordinator if in person. Instructions 
will be sent to the participant if completing the writing at home.  
a. Study coordinator will call the study participant to assess if they are willing and able to do the 
writing at home and set up a date and time for them to do the writing follow-up at home. 
b. Each participant will be sent a unique identifier (ex. 193JTA) that we will link to study ID and 
them they will be instructed use the code to identify their writing instead of their name. 
c. An instruction sheet will be emailed or sent to the participant via email or regular mail if writing 
long hand. 
d. The participants will be instructed to use the identifier in the subject line of email when they 
send the writing sample back to the study coordinator Mardee Merrill at 
Mardee.Merrill@imail.org or to Ramona Hopkins, PhD at Mona.Hopkins@imail.org.  

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e. If writing is done long-hand a self-addressed stamped envelope will be included to send back the 
writing to the study coordinator. 
 
Manipulation checks include completion of the Essay Evaluation form in which participants will rate 
how personal, meaningful, and reflective of their feelings their essay is. Participants in the control 
condition should rate this very low in comparison to participants in experimental conditions. All 
participants who complete follow up will receive a gift card after completing the writing intervention. 
 
4 Month Follow-up 
Four months after the writing exercise, participants will be contacted to complete an instrument 
battery by telephone. Follow-up measures include IES-R, HADS, PSS-4, Groningen Activities Restriction 
Scale (GARS) for assessing impact of the traumatic event on functional and emotional health and 
Posttraumatic Growth Inventory (PTGI). Following participation participants will receive gift card 
payment in the mail. 
 
4 Month Follow-up 
Hospital 
Depression 
and Anxiety 
Scale 
depression and anxiety 
14 items (7 
each for 
anxiety and 
depression). 
Items scored 0 
to 3. Total 
Scores of 8 or higher 
indicate symptoms or 
depression or anxiety.33 
Impact of 
Event Scale 
Revised (IES-
R) 
Screens for PTSD 
22-item scale 
measuring 
intrusion, 
avoidance and 
hyperarousal 
A mean score of ≥ 1.6 
indicates PTSD symptoms. 
34,35 
Perceived 
Stress Scale 
Feelings of stress 
4 items with 
scores that 
range from 0 
to 4 
Higher scores indicate 
greater stress.36,37 
Brief COPE 
Coping with stress 
14 dimensions 
with 2 
questions per 
dimension 
Higher scores indicated 
greater use of a given 
coping strategy.38 
Post- 
Traumatic 
Growth 
Inventory 
Positive perceptions of change 
following a traumatic event 
21 items that 
use a 6 point 
Likert scale (0- 
5) 
Higher Scores Indicate 
greater PTG 
Physical 
Symptoms 
Inventory – 13 
Item Version 
Examines physical symptoms 
experienced during previous 30 
days adapted to include medical 
utilization 
13 items that 
use a 5 point 
Likert Scale (1- 
5)  
Higher scores indicate more 
symptoms on more days. 
21,24 

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Groningen 
Activity 
Restriction 
Scale (GARS) 
Assess degree of restriction 
experienced due to providing care 
in 11 categories: caring for 
him/herself, caring for others, 
eating habits, shopping for 
him/herself, visiting friends, 
working on hobbies, sports and 
recreation, going to work, and 
maintaining friendship. Developed 
and used in ICU populations,46-49 
shopping for him/herself, visiting 
friends, working on hobbies, 
sports and recreation, going to 
work, and maintaining friendship. 
and used in ICU populations.46-49 
11 items scored 
from 1 to 4 
Scores range from 11 to 44 
with higher scores indicating 
greater activity restriction. 
Groningen 
Activity 
Restriction 
Scale (GARS) 
Assess degree of restriction 
experienced due to providing care 
in 11 categories: caring for 
him/herself, caring for others, 
eating habits, sleeping habits, 
doing household chores, going 
11 items scored 
from 1 to 4 
Scores range from 11 to 44 
with higher scores indicating 
greater activity restriction. 
Essay 
Evaluation 
Measure 
Perception 
that 
essay 
was 
personal, 
meaningful 
and 
revealing of their emotions 
Each item 
Likert 0-6 total 
range 0-18 
Higher scores indicate that 
participants found the 
essay personal and 
meaningful and revealing of 
their emotions (0-18)50 
Evaluation of essays not done with participant 
 
Informed Consent: 
Study-designated Intermountain Healthcare employees (either the research coordinator(s) or the study 
investigator(s)) will obtain informed consent from the study participant. The study staff member 
obtaining consent will provide the participant with the current IRB-approved Informed Consent Form 
and will be available to answer any questions the participant may have. Individuals approached for 
consent will be given as much time as they require to consider enrollment in the study. 
 
The ICU patient will not be approached or questioned. They are indirectly involved, as the study 
participant is defined by their relationship to the patient. Minimal information will be obtained about 
the patient from the medical record to allow assessment of the effects of acute severity of illness or 
length of stay. The ICU patient will not be consented as they are not the subject of the study and 
minimal information is collected regarding these individuals. We will ask for a waiver of informed 
consent to gather this data. 
 

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Waiver of Informed Consent 
The ICU patients are not directly involved and will not be approached or questioned. Minimal 
information will be obtained about the patients. The ICU patients will not be consented as they are not 
the subject of the study and minimal information is collected regarding these individuals. We will ask 
for a waiver of informed consent to gather this data. We feel it is not necessary or appropriate to 
obtain consent from the ICU patients for these reasons. 
 
Only the minimum PHI needed will be collected. We will only collect names, hospital ID number and 
dates necessary to determine hospital and length of ICU stay. The study data will be stored on secure 
computers and will be de-identified. We will protect confidentiality and privacy in a HIPAA- and Good 
Clinical Practice- compliant way. Subjects will be given an anonymous study ID. In addition to managing 
only non-identified data, we will also protect that data by storing it only on secure computers. The only 
data sharing will be with our collaborator Dr. Jorie Butler at the University of Utah. All other data 
sharing such as might be required for regulatory reasons or to comply with editorial requirements of 
scientific journals, will be deidentified. 
 
Risks: 
Based on prior research in psychology and in critical care, we anticipate that there will be only minimal 
risk to those participating in this research. Patients may experience some discomfort from answered 
survey questions and writing about their family members ICU experience. In our experience surveying 
many hundreds of patients and families during and after an ICU admission, this is very uncommon. 
Participants are always free to decline to answer any question or further participation. 
Breach of confidentiality is a potential risk, but the data will be appropriately safeguarded against 
inappropriate disclosure. 
 
Benefits: 
Data indicate that ICU admission results in adverse psychological outcome including depression, 
anxiety and posttraumatic stress disorder. If the intervention enhances PTG, we will be able to help 
family members of critically patients develop positive outcomes. Our ultimate goal is to understand, 
predict, and improve psychological outcomes (depression, anxiety and PTSD) in patients and their 
family members after ICU admission. This study may help future ICU patients and their family members 
by helping us to understand how PTG may affect psychological wellbeing for family of patients 
admitted to the ICU 
 
Impact on Intermountain 
Intermountain Medical Center is a pioneer in the study of long-term outcomes after critical illness and 
patient- and family-centered intensive care. We plan to expand these investigations into a better 
understanding of the long-term outcomes and acute patient- and family-related experiences 
associated with an ICU admission more generally. This work will allow us to expand prior expertise and 
reputation in the field of long-term outcomes after critical illness and to establish Intermountain 
Medical Center as a leader in interventions during critical illness that improve long-term outcomes. We 
see this research project as a key way to further cement Intermountain’s profound leadership in 
creating ICUs that are carefully attuned to the human side of serious illness. 
 

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Compensation: 
If participants decide to participate in the study, to compensate them for their time and effort, at the 
writing exercise visit, they will receive a $50 gift card or be mailed a $50 check. After the 4-month 
follow-up phone call, they will receive another $50 gift card or be mailed a $50 check. Thus, if they 
complete the study, they will receive a total of $100 for the two visits. 
 
Data Collection: 
 
Demographic Characteristics: Participant age, sex, ethnicity, years of educational attainment, 
identification with religion (e.g., Buddhism, Christian, Muslims well as “Spiritual but not religious” or 
“other”) were collected. The importance of religion was assessed using the following questions: (How 
important is religion in your daily life?) from (1) not at all to (4) extremely and religious service 
attendance (How frequently do you attend religious services?). History of anxiety and depression were 
assessed (e.g., Do you have a personal history of anxiety?), and whether they had ever received 
treatment by a physician or mental health provider. 
This study requires the use of the following information: 
 ICU Patient information (the only PHI required is the hospital ID number used to collect the 
non-PHI demographics and outcome information) 
o Age (if the patient’s age is greater than 89, it will be recorded as 89) 
o Sex 
o Race 
o Ethnicity 
o Primary ICU diagnosis 
o APACHE II score at admission 
o Prior ICU admissions in the last 5 years (per report from participant) 
o Mortality at 3 months (i.e., living or deceased per report from participant) 
o Hospital and ICU length of stay 
o Presence of mechanical ventilation 
o Baseline terminal illness (congestive heart failure, ESRD, liver failure, cancer) 
 
 Study Participant information: 
o Age 
o Sex 
o Race 
o Ethnicity 
o Religion (importance, affiliation, and degree of importance) 
o Employment status 
o Number of hours weekly spent with the patient (averaged over the last month) and 
whether the participant lives with the patient, 
o Highest level of education. 
o Limited medical history: diagnosed depression, anxiety, sleep disorder, obesity. 30,31 
o Psychiatric history of depression or anxiety 
o History of substance and alcohol abuse 
 

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The informed consent form describes the elements of PHI that will be used as a part of this study. All 
identifiable study information that is collected will be kept on computers owned and secured by 
Intermountain Healthcare. Any PHI collected for this study will be de-identified prior to disclosure to 
study collaborators outside of Intermountain Healthcare and only under authorization of current, valid 
data use agreements. The code used to de-identify these subjects will be retained by the 
Intermountain Healthcare Principal Investigator to allow re-identification of the subject should 
clarification of information be required. Identifiers of study participants will be maintained securely in 
order to report study results to participants, e.g., via newsletters. 
 
We will randomize family members to receive either the PTG intervention and or non-intervention 
control group (control writing condition). The intervention group will participate in a brief expressive 
writing intervention. The control group will receive a control writing condition (fact-based writing) and 
complete the other study measures. 
 
Descriptive statistics will be calculated for all demographic variables as well as all instruments (both at 
baseline and 4 month follow up). PTGI at 4 months (along with the secondary outcomes) will be 
compared between the intervention and control arms using Wilcoxon Rank Sum tests. Further, we will 
use linear regression to assess the relationship between expressive writing and PTGI at 4 months, 
adjusting for other relevant factors (i.e., participant demographics, (including age), patient 
demographics, illness severity of the patient, social support of the participant, caregiver burden, etc.). 
 
Sample Size: 
Studies of post-traumatic growth using the PTGI have sample means ranging from 45-77 51 52-55. We 
hypothesize that participants in the intervention arm will have a higher PTGI at 4 months compared to 
those in the control arm. Based on previous studies, we assumed a mean (SD) PTGI at 4 months of 4518 
in the control arm and 5621 in the intervention arm23,52,53. A power analysis based on the Wilcoxon 
Rank Sum test determined 102 patients are necessary to identify a significant difference (alpha=0.05) 
between the arms. To account for potential dropout, we will seek to enroll 130 patients total, 65 in 
each arm. 
 
Funding: 
We have applied for an IRMF grant. 
 
Copying Data Already Collected: 
Some of the questionnaires for this study are the same as the questionnaires for the study Family 
Presence (IRB #1050086). To avoid asking subjects the same questions multiple times in a short time 
period, if subjects have consented to this study and were previously consented and enrolled in the 
other study, responses to the same questionnaires in the other study will be copied into the data for 
this study. 
 

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McKiernan M, McCarthy G. Family members' lived experience in the intensive care unit: a 
phemenological study. Intensive Crit. Care Nurs. 2010;26(5):254-261. 
2. 
Anderson WG, Arnold RM, Angus DC, Bryce CL. Posttraumatic stress and complicated grief in 
family members of patients in the intensive care unit. J. Gen. Intern. Med. 2008;23(11):1871-
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Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family 
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Jamerson PA, Scheibmeir M, Bott MJ, Crighton F, Hinton RH, Cobb AK. The experiences of 
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Kleiber C, Halm M, Titler M, et al. Emotional responses of family members during a critical care 
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Pochard F, Darmon M, Fassier T, et al. Symptoms of anxiety and depression in family members 
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7. 
Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions 
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Netzer G, Sullivan DR. Recognizing, naming, and measuring a family intensive care unit 
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Cassell EJ, Leon AC, Kaufman SG. Preliminary evidence of impaired thinking in sick patients. 
Ann. Intern. Med. 2001;134(12):1120-1123. 
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Tedeschi RC, LG. Trauma and transformation: Growing in the aftermath of suffering. Thousand 
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12. 
Janoff-Bulman R. Shattered assumptions: Towards a new psychology of trauma. New York: Free 
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Joseph S, Linley PA. Growth following adversity: theoretical perspectives and implications for 
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Dekel S, Mandl C, Solomon Z. Shared and unique predictors of post-traumatic growth and 
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16. 
Ogińska-Bulik N. The role of social support in posttraumatic growth in people struggling with 
cancer. Health Psychology Report. 2013;1(1):1-8. 
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Swickert R, Hittner J. Social support coping mediates the relationship between gender and 
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Frazier P, Conlon A, Glaser T. Positive and negative life changes following sexual assault. J. 
Consult. Clin. Psychol. 2001;69(6):1048-1055. 
19. 
McMillen JC, Smith EM, Fisher RH. Perceived benefit and mental health after three types of 
disaster. J. Consult. Clin. Psychol. 1997;65(5):733-739. 

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Affleck G, Tennen H, Croog S, Levine S. Causal attribution, perceived benefits, and morbidity 
after a heart attack: an 8-year study. J. Consult. Clin. Psychol. 1987;55(1):29-35. 
21. 
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and disease. J. Abnorm. Psychol. 1986;95(3):274-281. 
22. 
Danoff-Burg SA, JD; Romanoff, NR; Kremer, JM; Strosberg, JM. Benefit finding and expressive 
writing in adults with lupus or rheumatoid arthritis. Psychology and Health. 2006;21(5):651-
665. 
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Stockton H, Joseph, S, Hunt, N. Expressive writing and posttraumatic growth: An internet-based 
study. Traumatology: An International Journal. 2014;20(2):75-83. 
24. 
Low CA, Stanton AL, Danoff-Burg S. Expressive disclosure and benefit finding among breast 
cancer patients: mechanisms for positive health effects. Health Psychol. 2006;25(2):181-189. 
25. 
Koopman C, Ismailji T, Holmes D, Classen CC, Palesh O, Wales T. The effects of expressive 
writing on pain, depression and posttraumatic stress disorder symptoms in survivors of intimate 
partner violence. J. Health Psychol. 2005;10(2):211-221. 
26. 
DiGangi JA, Gomez D, Mendoza L, Jason LA, Keys CB, Koenen KC. Pretrauma risk factors for 
posttraumatic stress disorder: a systematic review of the literature. Clin. Psychol. Rev. 
2013;33(6):728-744. 
27. 
Khalaila R. Patients' family satisfaction with needs met at the medical intensive care unit. J. Adv. 
Nurs.  2013;69(5):1172-1182. 
28. 
Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for 
relatives of patients dying in the ICU. N. Engl. J. Med. 2007;356(5):469-478. 
29. 
Butler J, Hirshberg EL, Hopkins RO, et al. Preliminary identification of coping profiles relevant to 
surrogate decision making in the ICU. PLoS One. (Under review). 
30. 
Adam EK, Kumari M. Assessing salivary cortisol in large-scale, epidemiological research. 
Psychoneuroendocrinology. 2009;34(10):1423-1436. 
31. 
Therrien F, Drapeau V, Lalonde J, et al. Awakening cortisol response in lean, obese, and reduced 
obese individuals: effect of gender and fat distribution. Obesity (Silver Spring, Md.). 
2007;15(2):377- 385. 
32. 
Butler JM, Hirshberg EL, Hopkins RO, et al. Identification of intensive care unit preferences and 
attributes clusters and stimulated family decision making in critical illness. BMJ: Supportive & 
Pallitive Care. 2015. 
33. 
Ware JE, Jr., Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual 
framework and item selection. Med. Care. 1992;30(6):473-483. 
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Bienvenu OJ, Williams JB, Yang A, Hopkins RO, Needham DM. Posttraumatic stress disorder in 
survivors of acute lung injury: evaluating the Impact of Event Scale-Revised. Chest. 
2013;144(1):24- 31. 
35. 
Weiss DS, Marmar CR. The impact of event scale-revised. Assessing Psychological Trauma and 
PTSD. 2004;2:168-189. 
36. 
Cohen S, Williamson G. Perceived Stress in a Probability Sample of the United States. In: 
Spacapan S, Oskamp S, eds. The Social Psychology of Health. Newbury Park, CA: Sage; 1988:31-
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Cohen S, Janicki-Deverts D. Who's Stressed? Distributions of psychological stress in the United 
States in probability samples from 1983, 2006 and 2009. J. Appl. Soc. Psychol. 2012;42:1320-
1334. 

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38. 
Carver CS. You want to measure coping but your protocol's too long: consider the brief COPE. 
Int. J. Behav. Med. 1997;4(1):92-100. 
39. 
Rammstedt B, & John, O.P. . Measuring personality in one minute or less: A 10-item short version 
of the Big Five Inventory in English and German. . Journal of Research in Personality. 2007;41:203- 
212. 
40. 
Choi J, Hoffman LA, Schulz R, et al. Health risk behaviors in family caregivers during patients' 
stay in intensive care units: a pilot analysis. Am. J. Crit. Care. 2013;22(1):41-45. 
41. 
Choi J, Hoffman LA, Schulz R, et al. Self-reported physical symptoms in intensive care unit (ICU) 
survivors: pilot exploration over four months post-ICU discharge. J. Pain Symptom Manage. 
2014;47(2):257-270. 
42. 
Choi J, Sherwood PR, Schulz R, et al. Patterns of depressive symptoms in caregivers of 
mechanically ventilated critically ill adults from intensive care unit admission to 2 months 
postintensive care unit discharge: a pilot study. Crit. Care Med. 2012;40(5):1546-1553. 
43. 
Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: a 
new short version and screening version. Gerontologist. 2001;41(5):652-657. 
44. 
Zarit SH, Orr NK, Zarit JM. The hidden victims of Alzheimer's disease: Families under stress. New 
York: New York University Press; 1985. 
45. 
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of 
burden. Gerontologist. 1980;20(6):649-655. 
46. 
Im K, Belle SH, Schulz R, Mendelsohn AB, Chelluri L. Prevalence and outcomes of caregiving 
after prolonged (> or =48 hours) mechanical ventilation in the ICU. Chest. 2004;125(2):597-606. 
47. 
Williamson GM, Schulz R. Pain, activity restriction, and symptoms of depression among 
community- residing elderly adults. J. Gerontol. 1992;47(6):P367-372. 
48. 
Van Pelt DC, Milbrandt EB, Qin L, et al. Informal caregiver burden among survivors of prolonged 
mechanical ventilation. Am. J. Respir. Crit. Care Med. 2007;175(2):167-173. 
49. 
Van Pelt DC, Schulz R, Chelluri L, Pinsky MR. Patient-specific, time-varying predictors of post-ICU 
informal caregiver burden: the caregiver outcomes after ICU discharge project. Chest. 
2010;137(1):88-94. 
50. 
Greenberg MA, Stone AA. Emotional disclosure about traumas and its relation to health: effects 
of previous disclosure and trauma severity. J. Pers. Soc. Psychol. 1992;63(1):75-84. 
51. 
Tedeschi RG, Calhoun LG. The Posttraumatic Growth Inventory: measuring the positive legacy 
of trauma. J. Trauma. Stress. 1996;9(3):455-471. 
52. 
Pollard C, Kennedy P. A longitudinal analysis of emotional impact, coping strategies and post- 
traumatic psychological growth following spinal cord injury: a 10-year review. Br. J. Health 
Psychol. 2007;12(Pt 3):347-362. 
53. 
Morrill EF, Brewer NT, O'Neill SC, et al. The interaction of post-traumatic growth and post-
traumatic stress symptoms in predicting depressive symptoms and quality of life. 
Psychooncology. 2008;17(9):948-953. 
54. 
Calhoun LG, Cann A, Tedeschi RG, McMillan J. A correlational test of the relationship between 
posttraumatic growth, religion, and cognitive processing. J. Trauma. Stress. 2000;13(3):521-527. 
55. 
Kashdan TB, Kane JQ. Posttraumatic distress and the presence of posttraumatic growth and 
meaning in life: Experiential avoidance as a moderator. Pers. Individ. Dif. 2011;50(1):84-89. 
 
 
 

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Appendixes: 
Include survey tools, data collection forms, etc. 
 
Appendix 1. (IESR, HADS, and Brief Cope) 
Appendix 2. Post Traumatic Growth Inventory 
Appendix 3. Essay Evaluation Measure 
Appendix 4. Groningen Activity Restriction Scale (GARS) 
Appendix 5. Physical Symptoms Scale 
Appendix 6. Social Support Index 
Appendix 7. Writing Instructions for ICU Experience Study Participants 
 
 

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Appendix 1. Impact of Event Scale Revised (IES-R) 
Permission from Dr. Weiss by Samuel Brown, MD MS pending. 
 
(Read the following statement to the participant): I really appreciate your help with these surveys. I 
want to ask about something else now. The following is a list of difficulties people sometimes have 
after stressful life events. I will read each item, and then ask you to indicate how distressing each 
difficulty has been for you during the past 7 days with respect to your experience with your loved 
one’s ICU stay. How much were you distressed or bothered by these difficulties? In the questions, the 
word “it” refers to your experience with your loved one’s ICU stay. 
 
 
1. Any reminder brought back feelings about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
2. I had trouble staying asleep. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
3. Other things kept making me think about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
4. I felt irritable and angry. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
5. I avoided letting myself get upset when I thought about it or was 
reminded of it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
 
6. I thought about it when I didn’t mean to. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
7. I felt as if it hadn’t happened or wasn’t real. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 

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8. I stayed away from reminders of it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
9. Pictures about it popped into my mind. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
10. I was jumpy and easily startled. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
11. I tried not to think about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
 
12. I was aware that I still had a lot of feelings about it, but I didn’t 
deal with them. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
13. My feelings about it were kind of numb. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
14. I found myself acting or feeling like I was back at that time. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
15. I had trouble falling asleep. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
16. I had waves of strong feelings about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
17. I tried to remove it from my memory. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
 

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18. I had trouble concentrating. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
19. Reminders of it caused me to have physical reactions, such as sweating, 
trouble breathing, nausea, or a pounding heart. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
20. I had dreams about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
21. I felt watchful and on guard. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
22. I tried not to talk about it. 
1 Not at all 
2 A little Bit 
3 Moderately 
4 Quite a bit 
5 Extremely 
 
 
 

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Hospital Anxiety and Depression Scale (HADS) License from GL Assessment pending. 
 
Record responses directly on licensed copy of instrument from Nfer Nelson, UK & include with CRF 
 
(Read the following introduction to the participant): I am now going to ask some different questions. 
Doctors are aware that emotions play an important part in most illnesses. This questionnaire is 
designed to help us to know how you feel. I will read each item with the possible responses. Please 
respond with the reply that comes closest to how you have been feeling in the past week. Don’t take 
too long over your replies: your immediate reaction to each item will probably be more accurate than 
a long, thought out response. 
 
1. 
I feel tense or ‘wound up’ 
1 Most of the time 
2 A lot of the time 
3 From time to time, occasionally 
4 Not at all 
2. 
I still enjoy the things I used to enjoy 
1 Definitely as much 
2 Not quite so much 
3 Only a little 
4 Hardly at all 
3. 
I get a sort of frightened feeling as if 
something awful is about to happen 
1 Very definitely and quite badly 
2 Yes, but not too badly 
3 A little, but it doesn’t worry me 
4 Not at all 
4. 
I can laugh and see the funny side of things 
1 As much as I always could 
2 Not quite so much now 
3 Definitely not so much now 
4 Not at all 
5. 
Worrying thoughts go through my mind 
1 A great deal of the time 
2 A lot of the time 
3 From time to time but not too often 
4 Only occasionally 
6. 
I feel cheerful 
1 Not at all 
2 Not often 
3 Sometimes 
4 Most of the time 

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7. 
I can sit at ease and feel relaxed 
1 Not at all 
2 Not often 
3 Sometimes 
4 Most of the time 
8. 
I feel as if I am slowed down 
1 Nearly all the time 
2 Very often 
3 Sometimes 
4 Not at all 
9. 
I get a sort of frightened feeling like ‘butterflies’ 
in the stomach 
1 Not at all 
2 Occasionally 
3 Quite often 
4 Very often 
10.  I have lost interest in my appearance 
1 Definitely 
2 I don’t take so much care as I should 
3 I may not take quite as much care 
4 I take just as much care as ever 
11.  I feel restless, as if I have to be on the move 
1 Very much indeed 
2 Quite a lot 
3 Not very much 
4 Not at all 
12.  I look forward with enjoyment to things 
1 As much as I ever did 
2 Rather less than I used to 
3 Definitely less than I used to 
4 Hardly at all 
13.  I get sudden feelings of panic 
1 Very often indeed 
2 Quite often 
3 Not very often 
4 Not at all 
14.  I can enjoy a good book or radio or TV program 
1 Often 
2 Sometimes 
3 Not often 
4 Very Seldom 
 
 
 

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Coping with Stress (Brief COPE) 
 
I haven’t 
been doing 
this at all 
I’ve been 
doing this a 
little bit 
I’ve been 
doing this a 
medium 
amount 
I’ve been doing 
this a lot 
1. I’ve been turning to work or other activities 
to take my mind off of things 
1 
2 
3 
4 
2. I've been concentrating my efforts on doing 
something about the situation I'm in. 
1 
2 
3 
4 
3. I've been saying to myself "this isn't real.". 
1 
2 
3 
4 
4. I've been using alcohol or other drugs to 
make myself feel better. 
1 
2 
3 
4 
5. I've been getting emotional support from 
others. 
1 
2 
3 
4 
6. I've been giving up trying to deal with it. 
1 
2 
3 
4 
7. I've been taking action to try to make the 
situation better. 
1 
2 
3 
4 
8. I've been refusing to believe that it has 
happened. 
1 
2 
3 
4 
9. I've been saying things to let my unpleasant 
feelings escape. 
1 
2 
3 
4 
10. I’ve been getting help and advice from 
other people. 
1 
2 
3 
4 
11. I've been using alcohol or other drugs to 
help me get through it. 
1 
2 
3 
4 
12. I've been trying to see it in a different 
light, to make it seem more positive. 
1 
2 
3 
4 
13. I’ve been criticizing myself. 
1 
2 
3 
4 
14. I've been trying to come up with a 
strategy about what to do. 
1 
2 
3 
4 
15. I've been getting comfort and 
understanding from someone. 
1 
2 
3 
4 
16. I've been giving up the attempt to cope. 
1 
2 
3 
4 
17. I've been looking for something good in 
what is happening. 
1 
2 
3 
4 
18. I've been making jokes about it. 
1 
2 
3 
4 
19. I've been doing something to think about 
it less, such as going to movies, watching TV, 
reading, daydreaming, sleeping, or shopping. 
1 
2 
3 
4 

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20. I've been accepting the reality of the fact 
that it has happened. 
1 
2 
3 
4 
21. I've been expressing my negative feelings. 
1 
2 
3 
4 
22. I've been trying to find comfort in my 
religion or spiritual beliefs. 
1 
2 
3 
4 
23. I’ve been trying to get advice or help from 
other people about what to do. 
1 
2 
3 
4 
24. I've been learning to live with it. 
1 
2 
3 
4 
25. I've been thinking hard about what steps 
to take. 
1 
2 
3 
4 
26. I’ve been blaming myself for things that 
happened. 
1 
2 
3 
4 
27. I’ve been praying or meditating 
1 
2 
3 
4 
28. I’ve been making fun of the situation 
1 
2 
3 
4 
 
 
 

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Appendix 2. Post Traumatic Growth Inventory 
Instructions: Please indicate for each of the statements below the degree to which this change 
occurred in your life as a result of your crisis, using the following scale. 
 
I did not 
experience 
this 
change as 
a result of 
my crisis 
I 
experienced 
this change 
to a very 
small degree 
as a result of 
my crisis 
I 
experienced 
this change 
to a small 
degree as a 
result of my 
crisis 
I 
experienced 
this change 
to a 
moderate 
degree as a 
result of my 
I 
experienced 
this change 
to a great 
degree as a 
result of my 
crisis 
I 
experienced 
this change 
to a very 
great degree 
as a result of 
my crisis 
My priorities 
about what is 
important in life 
0 
1 
2 
3 
4 
5 
An appreciation 
for the value of 
my own life 
0 
1 
2 
3 
4 
5 
I developed new 
interests 
0 
1 
2 
3 
4 
5 
A feeling of self- 
reliance 
0 
1 
2 
3 
4 
5 
A better 
understanding of 
spiritual matters 
0 
1 
2 
3 
4 
5 
Knowing that I 
can count on 
people in times 
of trouble 
0 
1 
2 
3 
4 
5 
I established a 
new path for my 
life 
0 
1 
2 
3 
4 
5 
A sense of 
closeness with 
others 
0 
1 
2 
3 
4 
5 
A willingness to 
express my 
emotions 
0 
1 
2 
3 
4 
5 
Knowing I can 
handle 
difficulties 
0 
1 
2 
3 
4 
5 
I’m able to do 
better things 
with my life 
0 
1 
2 
3 
4 
5 

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I did not 
experience 
this 
change as 
a result of 
my crisis 
I 
experienced 
this change 
to a very 
small degree 
as a result of 
my crisis 
I 
experienced 
this change 
to a small 
degree as a 
result of my 
crisis 
I 
experienced 
this change 
to a 
moderate 
degree as a 
result of my 
I 
experienced 
this change 
to a great 
degree as a 
result of my 
crisis 
I 
experienced 
this change 
to a very 
great degree 
as a result of 
my crisis 
Being able to 
accept the way 
things work out 
0 
1 
2 
3 
4 
5 
Appreciating 
each day 
0 
1 
2 
3 
4 
5 
New 
opportunities 
are available 
which 
wouldn’t have 
been 
0 
1 
2 
3 
4 
5 
Having 
compassion for 
others 
0 
1 
2 
3 
4 
5 
Putting effort 
into my 
relationships 
0 
1 
2 
3 
4 
5 
I’m more likely 
to try to change 
things which 
need changing 
0 
1 
2 
3 
4 
5 
I have a 
stronger 
religious faith 
0 
1 
2 
3 
4 
5 
I discovered 
that I’m 
stronger than I 
thought I was 
0 
1 
2 
3 
4 
5 
I learned a great 
deal about how 
wonderful 
people are 
0 
1 
2 
3 
4 
5 
I accept needing 
others 
0 
1 
2 
3 
4 
5 
 
 
 

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Appendix 3. Essay Evaluation Measure 
 
Instructions: Please answer the following questions about your essay using the scale provided. 
 
Not at  
All 
 
Low 
 
Slightly 
 
Neutral 
 
Moderately 
 
Very 
A Great 
Deal 
How personal was the 
essay that you wrote 
today? 
0 
1 
2 
3 
4 
5 
6 
How much did you 
reveal your emotions in 
what you wrote today? 
0 
1 
2 
3 
4 
5 
6 
Have much of what 
you wrote today have 
you shared with/told 
others? 
0 
1 
2 
3 
4 
5 
6 
 
 
 

ICU Experience Among Family Members 
 
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Appendix 4. 
Groningen Activity Restriction Scale (GARS) 
The following questions refer to daily activit ies which should be performed frequently. In each 
question it is asked whether you are able to perform the activity at this moment. It is not intended to 
assess whether you are actually performing the activities, but if you can do them if necessary. 
Response categories for each item 
1. Yes, I can do it fully independently without any difficulty 
2. Yes, I can do it fully independently but with some difficulty 
3. Yes, I can do it fully independently but with great difficulty 
4. No, I cannot do it fully independently, I can only do it with someone’s help 
GARS items 
1. Can you, fully independently, dress yourself? 
2. Can you, fully independently, get in and out of bed? 
3. Can you, fully independently, stand up from sitting in a chair? 
4. Can you, fully independently, wash your face and hands? 
5. Can you, fully independently, wash and dry your whole body? 
6. Can you, fully independently, get on and off the toilet? 
7. Can you, fully independently, feed yourself? 
8. Can you, fully independently, get around in the house (if necessary with a cane or walker)? 
9. Can you, fully independently, go up and down the stairs? 
10. Can you, fully independently, walk outdoors (if necessary with a cane or walker)? 
11. Can you, fully independently, take care of your feet and toenails? 
12. Can you, fully independently, prepare breakfast or lunch? 
13. Can you, fully independently, prepare dinner? 
14. Can you, fully independently, do “light” household activities (for example, dusting and tidying up)? 
15. Can you, fully independently, do “heavy” household activities (for example mopping, cleaning the 
windows, and vacuuming)? 
16. Can you, fully independently, wash and iron your clothes? 
17. Can you, fully independently, make the beds? 
18. Can you, fully independently, do the shopping? 
 
Activity Restriction Scale (ARS) 
“Please tell me how much you have restricted your activities in each of the following areas due to the 
care you are providing to your loved one: 
1. 
Care of yourself? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
2. 
Caring for others? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 

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3. 
Eating habits? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
4. 
Sleeping habits? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
5. 
Doing household chores? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
6. 
Going shopping for him/herself 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
7. 
Visiting friends? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
8. 
Working on hobbies? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
9. 
Sports and recreation? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
10. 
Going to work? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 
11. 
Maintaining friendship? 
1 Not restricted at all 
2 Slightly restricted 
3 Moderately restricted 
4 Greatly restricted 

ICU Experience Among Family Members 
 
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Appendix 5. Physical Symptoms Scale 
 
Instructions: On how many of the past 30 days have you experienced each of the following 
symptoms? 
 
Number of Days 
0-30 
Headache 
Stomach Ache/Pain/Upset 
Chest Pain 
Runny/Congested Nose 
Coughing/Sore Throat 
Faintness/Dizziness 
Shortness of Breath 
Racing/Pounding Heart 
Stiff/Sore Muscles 
 
Instructions: In the past 30 days, have you seen a doctor/health care professional for treatment for any 
of these symptoms? 
 
Yes 
No 
Headache 
Stomach Ache/Pain/Upset 
Chest Pain 
Runny/Congested Nose 
Coughing/Sore Throat 
Faintness/Dizziness 
Shortness of Breath 
Racing/Pounding Heart 
Stiff/Sore Muscles 
 
 
 

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Appendix 6. Social Support 
 
Instructions: When we need support such as advice, understanding or a favor, our relationship with 
other people (for example, parents, spouses, friends), may or may not have both helpful and upsetting 
aspects. For the person most important to you, please complete the following. 
 
 
Specify the relationship to you (such as a spouse, sister, co-worker, or friend) and the gender of 
the person 
 
Provide an estimate of the length of time you have known this person, and the average number 
of times per week you have contact with this person 
 
When you need support such as advice, understanding or a favor, rate this person on: 
o How generally helpful this person is to you (using the scale titled “HOW HELPFUL?”) 
o How generally upsetting this person is to you (using the scale titled “HOW 
UPSETTING?”) 
(Note: When asked to rate the extent the individual is HELPFUL, you should ignore any 
upsetting aspects of the relationship. When asked to rate the extent the individual is 
UPSETTING, you should ignore any helpful aspects of the relationship.) 
 
For the final rating, indicate how unpredictable the person is when you need support such as 
advice, understanding or a favor. 
 
HOW 
HELPFUL is 
this person 
to you? 
HOW 
UPSETTING 
is this 
person to 
you? 
HOW 
UNPREDICTABLE 
is this person to 
you? 
Initials of 
Relationship Gender 
Appropriate Average 1 = Not at 
1 = Not at 
1 = Not at all 
person 
to you. 
of 
length of 
number 
all helpful 
all 
unpredictable 
most 
person. time you 
of times 2 = A little 
upsetting 
2 = A little 
Important 
have 
per 
helpful 
2 = A little 
unpredictable 
to you. 
known the 
week 
3 = 
upsetting 
3 = Somewhat 
person 
you 
Somewhat 
3 = 
unpredictable 
(years or 
have 
helpful 
Somewhat 
4 = Moderately 
months). 
contact 
4 = 
upsetting 
unpredictable 
with 
Moderately 4 = 
5 = Very 
the 
helpful 
Moderately unpredictable 
person. 
5 = Very 
upsetting 
6 = Extremely 
helpful 
5 = Very 
unpredictable 
6 = 
upsetting 
(Circle one 
Extremely 
6 = 
number) 
helpful 
Extremely 
(Circle one 
upsetting 
number) 
(Circle one 
number) 
1 2 3 4 5 6 
1 2 3 4 5 6 
1 2 3 4 5 6 
 
 

ICU Experience Among Family Members 
 
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P.I.: Ramona Hopkins, PhD 
 
Version Date: 5.28.2020 
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Appendix 7.  Writing Instructions for ICU Experience Study Participants 
 
Writing Instructions for Study Participants (A) 
 
Thank you for agreeing to complete the writing part of this study at home. Below are instructions for 
the writing session. 
1. You have been assigned a unique identifier to use instead of your name. For example, your 
identifier could be 193JAO. 
 
2. Writing session: You will write for 20 minutes on your computer, take a 10 to 15-minute break 
and then write for 20 minutes. After the second writing sessions take a 10 to 15-minute break 
and write for 20 minutes (third writing session). 
 
3. Save each writing session to your computer, please save your writing. Title the document as the 
unique identifier (193JAO) we sent you and ICU Experience. Example: 193JAO ICU Experience. 
Save the writing to your computer. 
 
4. Label each writing session. The first one should be writing 1. The second writing as writing 2 
and the third as writing 3. All three writing sessions can be saved in one document, but please 
label each one so we know which session is which (session 1, session 2, or session 3). 
 
5. Prior to starting each writing session, please read the instructions below. 
 
Writing Instructions 
“What I would like you to write about for these three sessions are your deepest thoughts and feelings 
about your experience with your family member in the Intensive Care Unit (ICU). I realize that people 
with a loved one in the ICU experience a full range of emotions and thoughts, and I want you to focus 
on any and all of them. In your writing, I want you to really let go and explore your very deepest 
emotions and thoughts. You might think about all the various feelings and changes that you 
experienced before your loved one was hospitalized in the ICU, after the diagnosis that led them to the 
ICU, during treatment, and now. Whatever you choose to write, it is critical that you really focus on 
your deepest thoughts and feelings. Ideally, I would like you to focus on feelings, thoughts, or changes 
that you have not discussed in great detail with others- private feelings. You might also tie your 
thoughts and feelings about your experiences with having your loved one in the ICU to other parts of 
your life, i.e., your childhood, people you love (this loved one and others), who you are, or who you 
want to be. Again, the most important part of your writing is that you really focus on your deepest 
emotions and thoughts. The only rule we have is that you write continuously for the entire time. If you 
run out of things to say, just repeat what you have already written. Don’t worry about grammar, 
spelling, or sentence structure. Don’t worry about erasing or crossing things out. Just write.” 
 
6. Once you have completed your writing, email your writing to Mardee Merrill at 
Mardee.Merrill@imail.org or to Ramona Hopkins, PhD at Mona.Hopkins@imail.org. In the 
subject line put your identifier, in this example 193JAO. 

ICU Experience Among Family Members 
 
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P.I.: Ramona Hopkins, PhD 
 
Version Date: 5.28.2020 
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Please contact Mardee Merrill if you have any questions at 801-507-4608 or Mardee.Merril@imail.org. 
 
Writing Instructions for Study Participants (B) 
 
Thank you for agreeing to complete the writing part of this study at home. Below are instructions for 
the writing session. 
1. You have been assigned a unique identifier to use instead of your name.  For example, your 
identifier could be 193JAO. 
 
2. Writing session: You will write for 20 minutes, take a 10 to 15-minute break and then write for 
20 minutes. After the second writing sessions take a 10 to 15-minute break and write for 20 
minutes (third writing session). 
 
3. Save each writing session to your computer, please save your writing. Title the document as the 
unique identifier (193JAO) we sent you and ICU Experience. Example: 193JAO ICU Experience. 
Save the writing to your computer. 
 
4. Label each writing session  The first one should be writing 1. The second writing as writing 2 and 
the third as writing 3. All three writing sessions can be saved in one document, but please label 
each one so we know which session is which (session 1, session 2, or session 3). 
 
5. Prior to starting each writing session, please read the instructions below. 
 
“What I would like you to write about for these three sessions are all the facts about your experience 
with your family member in the Intensive Care Unit (ICU). We are not interested in your thoughts and 
emotions. Please do not include them. We are interested in all the facts about how your loved one came 
to the ICU and the facts about your experiences in the ICU with your loved one. The only rule we have is 
that you write continuously for the entire time. If you run out of things to say, just repeat what you 
have already written. Don’t worry about grammar, spelling, or sentence structure. Don’t worry about 
erasing or crossing things out. Just write.” 
 
6. Once you have completed your writing, email your writing to Mardee Merrill at 
Mardee.Merrill@imail.org or to Ramona Hopkins, PhD at Mona.Hopkins@imail.org. In the 
subject line put your identifier, in this example 193JAO. 
 
Please contact Mardee Merrill if you have any questions at 801-507-4608 or Mardee.Merril@imail.org. 
 
Writing Instructions for Study Participants who do not have a Computer (C) 
 
Thank you for agreeing to complete the writing part of this study at home. Below are instructions for 
the writing session. 
1. You have been assigned a unique identifier to use instead of your name. For example, your 
identifier could be 193JAO. 

ICU Experience Among Family Members 
 
Version 14.0 
P.I.: Ramona Hopkins, PhD 
 
Version Date: 5.28.2020 
Page 33 of 34 
 
2. Writing session: You will write for 20 minutes long-hand, take a 10 to 15-minute break and then 
write for 20 minutes. After the second writing sessions take a 10 to 15-minute break and write 
for 20 minutes (third writing session). 
 
3. Title the document as the unique identifier (193JAO) we sent you and staple together if 
possible. 
 
4. Label each writing session. The first one should be writing 1. The second writing as writing 2 
and the third as writing 3. All three can be in one document, but please label each writing 
session so we can tell which is which. 
 
5. Prior to starting each writing session, please read the instructions below. 
 
Writing Instructions 
“What I would like you to write about for these three sessions are your deepest thoughts and 
feelings about your experience with your family member in the Intensive Care Unit (ICU). I realize 
that people with a loved one in the ICU experience a full range of emotions and thoughts, and I 
want you to focus on any and all of them. In your writing, I want you to really let go and explore 
your very deepest emotions and thoughts. You might think about all the various feelings and 
changes that you experienced before your loved one was hospitalized in the ICU, after the 
diagnosis that led them to the ICU, during treatment, and now. Whatever you choose to write, it is 
critical that you really focus on your deepest thoughts and feelings. Ideally, I would like you to 
focus on feelings, thoughts, or changes that you have not discussed in great detail with others- 
private feelings. You might also tie your thoughts and feelings about your experiences with having 
your loved one in the ICU to other parts of your life, i.e., your childhood, people you love (this loved 
one and others), who you are, or who you want to be. Again, the most important part of your 
writing is that you really focus on your deepest emotions and thoughts. The only rule we have is 
that you write continuously for the entire time. If you run out of things to say, just repeat what you 
have already written. Don’t worry about grammar, spelling, or sentence structure. Don’t worry 
about erasing or crossing things out. Just write.” 
 
6. Once you have completed your writing, you will be provided with a self-addressed stamped 
envelope. Please your writing sample inside and mail to: 
 
Mardee Merrill 
Pulmonary Research 
Sorenson Heart-Lung Center, 6th floor 
5121 S. Cottonwood Street 
Murray , Utah 84107 
 
Please contact Mardee Merrill if you have any questions at 801-507-4608 or Mardee.Merril@imail.org. 
 

ICU Experience Among Family Members 
 
Version 14.0 
P.I.: Ramona Hopkins, PhD 
 
Version Date: 5.28.2020 
Page 34 of 34 
Writing Instructions for Study Participants who do not have a Computer (D) 
 
Thank you for agreeing to complete the writing part of this study at home. Below are instructions for 
the writing session. 
1. You have been assigned a unique identifier to use instead of your name.  For example, your 
identifier could be 193JAO. 
 
2. Writing session: You will write for 20 minutes long-hand, take a 10 to 15-minute break and then 
write for 20 minutes. After the second writing sessions take a 10 to 15-minute break and write 
for 20 minutes (third writing session). 
 
3. Title the document as the unique identifier (193JAO) we sent you and staple together if 
possible. 
 
4. Label each writing session. The first one should be writing 1. The second writing as writing 2 
and the third as writing 3. All three can be in one document, but please label each writing 
session so we can tell which is which. 
 
5. Prior to starting each writing session, please read the instructions below. 
 
Writing Instructions 
 
“What I would like you to write about for these three sessions are all the facts about your experience 
with your family member in the Intensive Care Unit (ICU). We are not interested in your thoughts and 
emotions. Please do not include them. We are interested in all the facts about how your loved one came 
to the ICU and the facts about your experiences in the ICU with your loved one. The only rule we have is 
that you write continuously for the entire time. If you run out of things to say, just repeat what you 
have already written. Don’t worry about grammar, spelling, or sentence structure. Don’t worry about 
erasing or crossing things out. Just write.” 
 
6. Once you have completed your writing, you will be provided with a self-addressed stamped 
envelope. Please your writing sample inside and mail to: 
 
Mardee Merrill 
Pulmonary Research 
Sorenson Heart-Lung Center, 6th floor 
5121 S. Cottonwood Street 
Murray , Utah 84107 
 
Please contact Mardee Merrill if you have any questions at 801-507-4608 or Mardee.Merril@imail.org.