Me & My Wishes: An Efficacy Trial of Long Term Care Residents With Alzheimer's Using Videos to Communicate Care Preferences With Caregivers
Phase: NA
Conditions: Health Communication
Sponsor: University of Utah

Me & My Wishes 
Project Training & Protocol Manual 
 Me & My Wishes: An efficacy trial of long-term care residents with Alzheimer’s using videos to 
communicate care preferences with caregivers 
National Clinical Trial (NCT) Identified Number:  NCT03861429 
Principal Investigator: Gail Towsley, PhD NHA 
Sponsor: University of Utah 
Grant Number: R21AG058094 
Funded by: NIA 
August, 2019 

 
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Table of Contents  
INTRODUCTION   
Chapter One: Background and Significance …………………………..…. 4   
Chapter Two: Purpose and Objectives ………………………………….... 7  
PROCEDURES   
Training Checklist ………………………………………….……...  11 
Chapter Three: Eligibility, Recruitment and Enrollment ……………...... 13  
Eligibility Criteria ……………………………………………….…. 13  
Role of the Study Coordinator ……………………….………….... 14   
Staff, Family and Resident Recruitment……….…………………. 15   
Care Conference Staff Recruitment and Enrollment ……….…… 15 
Family Consent and Survey Scripting………………………...……16 
Resident Recruitment………………………………………………..17 
Resident Enrollment …………………......................................... 19  
Participant Confidentiality ………………………………………….22 
Data Security ………………………………………………………...24 
Withdrawal of Participation / Attrition …………..………….…… 24 
 
Chapter Four: Baseline Sub Study Procedures ……………………………. 25 
 
Resident Baseline Survey …………………………………………… 25 
 
Staff Baseline Survey ………………………………………………... 25 
 
Family Baseline Survey ……………………………………………….25 
 
Care Conference Audio Recording ……………………………….….26 
 
Care Conference Staff and Family Compensation ……………....….25 
Chapter Five: Facilitating the Conversation ………………………………...27   
Role of the Facilitator ……………………………………………...…27 
Process for Administering the Conversation Guide ………............ 28   
Resident Compensation ………………………………………………29 
Fidelity…………………………………………………………………30 
 

 
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Chapter Six: Video Production   
Video Recording …………...……………………….……………... 31 
Video Editing …………………………………………….………… 34 
Chapter Seven: Post Video Viewing - Family 
 
 
Family………………………………………………………. 35 
Chapter Eight: Adverse Events …………………………………………… 36 
DATA COLLECTION AND MANAGEMENT    
Chapter Nine: Quantitative Data ………………………………...………. 37   
Surveys …………………………………………………….………..37   
   
References …………………………………………………………………………. 38   
Abbreviations ……………………………………………………………………… 39 
 
 
 
 
 
 
 
 
 
 
 

 
4 
INTRODUCTION 
Chapter One  
 
Background and Significance   
  
 
Nursing Home Basics  
“The last place we go to live.” - Gail Towsley  
 
Definition  
  
A nursing home (NH) is a place where people who are too sick to be cared for at 
home, but who also don't need to be in the hospital, can live. Most nursing homes have 
skilled nurses and nurse assistants on hand 24 hours a day. Some NHs are set up like a 
hospital to provide rehabilitation services, and residents can receive medical care, physical, 
occupational and speech therapy. Other NHs are set up to feel more like a home, and 
provide long-term care. Often in this type of setting there is no fixed schedule, and kitchens 
might be open to residents. Some NHs have specialty care units for people with cognitive 
impairment, such as Alzheimer's disease. NHs are not only for the elderly, but for anyone 
who requires 24-hour care.   
 
Culture Change 
  
The culture-change movement that began in the 1980s in NHs is a broad effort to 
transform NHs from impersonal health care institutions into person-centered homes where 
long-term care is provided. Prior to the efforts that began three decades ago, residents often 
faced boredom and experienced learned helplessness, among other negative traits. The 
culture-change movement, however, set goals to individualize care for residents promoting 
person-centered care through reorientation of the facility’s culture itself. Culture change 
strives to honor resident's individual rights, and enhances their quality of life and the quality 
of care that they receive. Ideally, facilities would adopt the following principles to facilitate 
person-centered care aligned with the culture-change movement: resident direction; 
homelike atmosphere; close relationships; staff empowerment; collaborative decision-
making; and quality-improvement processes.   
 
Care Conference 
  
Care conferences are held for every resident in the NH to help the care team share 
information and to create a plan of care together that meets the resident's needs. A care plan 
includes what the resident's needs are, what the team's goals are for meeting those needs, 
and what steps are planned to meet the goals. Care conferences are held at least quarterly 
for each resident, and include the following people in the care team: the resident; family 
(when the resident asks them to come); nursing staff (e.g. resident care manager); social 
services staff; rehab staff (if applicable); activities staff; and dietary staff. In some instances 

 
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the doctor may attend. At each care conference a shared assessment is given (a list of 
resident needs) by the team to help create the plan of care or to revisit the goals already set. 
The care conference team also discusses facts about the residents, especially at the first 
conference, including family and work background, medical and social needs, attitude and 
interests, likes and dislikes. This information allows the team to create a plan (based on their 
completion of assigned sections of the minimum data set (MDS)). Each member knows 
their part, but also knows what the others are doing in the care of each resident.  
  
 
 
End-of-Life Care Basics  
“There may be no single thing that can teach us more  
about life than death.” – Arianna Huffington 
 
Definition 
 
End-of-Life (EOL) care includes the support and medical care provided to a person 
during the time surrounding death. Older adults often live with one or more chronic 
illnesses and need a lot of care in the final days, weeks and sometimes months prior to 
dying, therefore care can begin long before death, and continues for some time following 
with bereavement care for loved ones and caregivers.   
No one experiences death in the same way, and preferences for care at this time are 
highly individual. The term “good death” means something different for each person. Some 
people want to know when death is near in order to say final goodbyes and get 
responsibilities in order. Some wish for death to come more quickly, or suddenly, to avoid 
lingering. Others may wish to pass away at home, and still others may wish to have 
everything possible done to treat the disease or to prolong life, which often requires 
admission to the hospital, where many older adults end up passing away. Some want to be 
surrounded by family, and others may want to be alone.   
EOL care involves directing health care efforts to address physical comfort, mental 
and emotional needs, spiritual issues, and practical tasks. Physical needs include managing 
pain and difficulty breathing, maintaining skin integrity or treating irritation or wounds, 
addressing any digestive issues and managing fatigue. Hospice care is one way to facilitate 
EOL health care, though many do not receive this specialized care for various reasons 
including fear that electing Hospice care means doing nothing to treat illness.    
   
Importance of Advance Care Planning  
  
• Advance Care Planning (ACP) is about doing what is possible to ensure that the 
health care you may one day receive is consistent with your wishes and preferences 
should you be unable to make decisions and/or speak for yourself. There are many 
ways to record your wishes and preferences that are discussed in the next section. 
These are called Advance Directives.   
 
• ACP is more than just creating Advance Directives, however. It involves learning 
about the types of decisions that might need to be made, considering those decisions 

 
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ahead of time, appointing a surrogate decision-maker, and making sure that the 
surrogate knows, understands and will follow your care preferences through focused 
conversations. These conversations allow individuals to discuss things that are not in 
Advance Directive documents, such as the desire for the family to make peace, be 
present at the time of death or not, and more. 
   
• ACP is part of an ongoing, comprehensive care plan for those with progressive, 
chronic illness that considers social support, care preferences and the likely course of 
illness, called disease trajectory. It is important that the patient and family 
understand the medical and functional condition of the patient, and should consider 
what that might look like or how that might change in the upcoming months or years 
to anticipate what events can happen. ACP can help to alleviate unnecessary 
suffering, and improve quality of life. The goals of ACP are to promote proactive 
decision-making and to understand patient values, rather than reacting to changes in 
condition.  
  
• 
 Goals of Care. Ideally, Goals of Care (GOC) occur with medical providers, 
residents (patients) and their caregivers.  Goals of care discussions include 
identification of what is important to the person, and may provide prioritization of 
their specific goals. GOC may be a formal document found easily in a medical chart, 
or it may be tucked in with other advance directives or staff notes including nursing 
or social service notes.  
 
 Potential Goals: 
 
i. 
Cure of disease 
ii. 
Avoidance of premature death 
iii. 
Maintenance of or improvement in function 
iv. 
Prolongation of life (live longer) 
v. 
Slow the progress of decline 
vi. 
Relief of suffering (provide comfort care/palliative care) 
a. Symptom management 
vii. 
Optimized quality of life (improve quality of life) 
viii. 
Maintenance of control (preserve independence/autonomy) 
ix. 
Accomplish something particular (personal goal) 
x. 
A good death (preparation for death) 
xi. 
Support for families and loved ones 
xii. 
Other (spiritual needs, remain at home, strengthen 
relationships, etc.) 
 
Types of Advance Directives: 
 

 
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• Living Will. The living will provides a way for an individual to instruct a physician 
or other health care provider as to when to use, withhold or withdraw life-sustaining 
treatment when that individual no longer has the ability or capacity to make 
decisions about life-sustaining treatment.  
 
• Health Care Proxy. A health care proxy is sometimes called a “health care 
surrogate,” and is a durable power of attorney specifically designed to cover medical 
treatment.   
 
• Durable Power of Attorney. The durable power of attorney document states the 
types of treatments an individual does and does not want, but in addition allows the 
surrogate decision-maker to make decisions beyond those listed in the document 
when the individual is unable to do so.   
 
• Physician Orders for Life-Sustaining Treatment. This document is generally known 
as the “POLST” form, and was first developed in Oregon. This tool is best 
supplemented by other advance care planning, and requires discussion between 
patient and/or surrogate with the treating provider to determine the patient’s EOL 
care goals and wishes. Several aspects of resuscitation are represented on this form, 
including artificial nutrition and hydration, and comfort care versus more aggressive 
treatment. One of the primary benefits of the POLST form is its transferability 
through various institutions and also that it is to be recognized by all health care 
professionals.   
 
• **Do Not Resuscitate Order. Otherwise known as “DNR” orders, this document 
addresses the unwanted resuscitation of a terminally ill person. Without this order, 
emergency medical service providers are obligated to try to resuscitate someone 
whose heart or breathing has stopped.  
• **Do Not Hospitalize Order. A do not hospitalize (DNH) order is a type of advance 
directive that indicates that a patient does not wish to be hospitalized. A DNH order 
is written by a physician and applies to the patient’s current health status.  
 
**Technically, not an advance directive but sometimes classified as one 
 
 
Significance  
   
NHs are unique settings because they serve as both a place of residence and a place 
in which to receive care. NH residents often have multiple chronic conditions, and need 
assistance with activities of daily living. Person-centered care in the NH includes increased 
exchange of information about the health care system, symptom experience, and both 
current and EOL care preferences, yet this rarely happens in depth. Knowing resident 
preferences is essential to providing high-quality care. Unfortunately, research indicates that 

 
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the quality of care in NHs is often suboptimal, citing deficits in staff training, symptom 
management, treating residents with dignity and respect, and communication.   
Though family and staff are often solicited for information on their experiences, it is 
the resident's voice that is critical to discussion about care preferences. However, more often 
than not, these conversations are missed. Dr. Towsley found in initial research that the 
reasons for missed conversations about resident's EOL preferences are related to three main 
categories: inquiry, assumptions, and conveying. Residents were either not asked, their 
preferences were assumed to be known, or the information that the resident shared was not 
passed on to others. Herein lies the basis for Me & My Wishes.  
   
 
 

 
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Chapter Two   
 
Purpose and Objectives   
 
Communication Tool for Care Preferences 
 
Few NH facilities have systematic approaches to elicit and communicate information 
about resident preferences. The goal of this research is to test the efficacy of a 
communication tool that conveys residents' current day-to-day and EOL care preferences. 
There is strong evidence that compared with verbal instructions and narrative alone, video 
decision aids and visual images more effectively communicate patient education messages 
and inform patient decision making.   
Me & My Wishes offers a systematic approach to discussing, listening, and viewing 
residents' preferences for daily and EOL care. Starting with preferences for today, Me & My 
Wishes begins a pathway for ongoing communication about a resident's preferences for care 
rather than a sole conversation focused on EOL. Sharing the video with staff and family 
allows multiple viewers to receive consistent information and can facilitate conversation 
with residents. Me & My Wishes videos have the potential to improve communication 
between residents, family and staff, and integrating these videos into care practices is novel 
to any clinical environment - especially NHs.   
  
Stage II Efficacy 
 
The IOM report Dying in America acknowledges the need to facilitate meaningful 
conversations with patients, families, and caregivers to promote awareness, raise expectations 
about care options, and have open exchanges about end of life (EOL).1 Such conversations are 
infrequent in nursing homes2 and even rarer for persons with mild to moderate dementia 
(Alzheimer’s disease and other dementias, or ADRD) even though the majority (67%) of persons 
with dementia die in this setting.3 Consequences of not having these conversations include 
residents not receiving the care and treatment they want, as well as family distress, uncertainty, 
or conflicts due to residents’ unknown wishes in the face of needed family decision making.4-5 
Only once family and nursing home staff become aware of residents’ preferences can care be 
truly person-centered and congruent with resident wishes. We have developed and demonstrated 
feasibility for an innovative systematic intervention—Me & My Wishes—that communicates 
residents’ preferences via personalized video recorded conversations. Me & My Wishes are 
videos of nursing home residents talking about their preferences for care, and include four 
sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of 
Life, and Afterthoughts.6 Videos are approved by the resident, and shared with nursing home 
staff and family. 
 
The long-standing challenge for U.S. nursing homes is to provide high-quality care 
tailored to the unique needs and preferences of the 1.4 million older adults who live and die 
there.7,8 Studies indicate that nursing home quality of care can be suboptimal with deficits in staff 
training and support, symptom management, treating residents with dignity and respect, and 
communication.9-12 Contrary to what many care providers believe, persons with mild to moderate 
dementia can accurately express their everyday and EOL prferences.13-16  Our feasibility study 
included these individuals and demonstrated that they were capable of communicating their 

 
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preferences in the videos. Including individuals with mild to moderate cognitive limitations in 
advance care planning discussions and expressing their EOL preferences is warranted, viable and 
an ethical approach.13,14 Incorporating Me & My Wishes into the care planning process is 
expected to provide an efficient and effective way for residents to communicate their care 
preferences for today and at EOL, and to positively influence confidence in communicating 
preferences and in facilitating documentation of care planning documents.   
 
Our long-term goal is to scale and fully incorporate Me & My Wishes into multiple 
settings providing long term services and supports. Ultimately, integrating Me & My Wishes 
videos into the electronic health record or another platform allows for video viewing by multiple 
individuals and disciplines in various settings. Our short-term goal, and the goal of this proposal, 
is to conduct Stage II efficacy testing of Me & My Wishes. We will employ a randomized wait-
list control design of six nursing homes (48-54 residents). Three nursing homes will be assigned 
to an early intervention group (residents will share videos initially) and three assigned to the 
wait-list controls (residents will delay sharing videos). Videos can be viewed two ways: 1) in 
resident quarterly care conferences; and 2) via a secured web-based link for resident-identified 
family members. After video viewing, the resident, family and staff can discuss key messages 
and preferences of the video and add to the care plan.  
 
Specific Aim 1: Examine the efficacy of the Me & My Wishes intervention among a sample 
of nursing home residents with dementia. 
     Hypothesis 1: Compared to the waitlist control group (Group 2), the intervention group 
(Group 1) will have an increase in the proportion of residents with documented goals of care 
discussions or self-reported conversations about preferences 90 days post video viewing.  
Specific Aim 2: Examine self-efficacy of communicating preferences among residents with 
dementia, informal (family) and formal (staff) caregivers.  
     Hypothesis 2: Compared to the waitlist control group (Group 2), the intervention group 
(Group 1) will have greater self-efficacy scores for communicating preferences 90 days post 
video viewing.  
     Hypothesis 3: Compared to the waitlist control group (Group 2), the intervention group 
(Group 1), the proportion of residents with documented new or changed care planning 
documents (e.g. advance directive) will increase by 90 days post video viewing.  
Specific Aim 3: Describe congruence of preferences observed in the Me & My Wishes 
video, care conference audio recording, medical record (e.g. POLST), and in family and 
staff surveys. 
 
 

 
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PROCEDURES  
 
Training Checklist for Research Staff 
 
Orientation to Project   
 
____ CITI/GCP Trainings 
____ Read: Towsley (2015) and Towsley (2017) Articles   
____ Review: R21 Research Plan   
____ Read: Training Manual Introduction 
____ ID Badge 
____ UBox 
____ IRB (ERICA) 
____Encryption 
____Skype for Business 
 
 
Recruitment/Enrollment   
 
____ Review Documents: Eligibility Checklist, Demographic & Clinical Information, Consents 
____ Practice approaching residents and describing the study  
____ Practice consenting process  
____ Practice approaching NH staff and families to describe the study 
____ Practice contacting family/friends via telephone (consent and survey procedures) 
____ Create a Tickler System/Calendar for MMW video recording, care conference and follow ups 
 
Video Production 
 
____ Practice facilitating the Conversation Guide   
____ Video Recording and Equipment 
____ Video Editing (see detailed process on page X) 
 
 
Data Collection & Management 
 
Cloud Storage  
 
____ REDCap: Orientation, Survey Entry and Data Management 
____ Data Security: Information Storage and Confidentiality 
____REDCap participant tracking (enrollment, refusals, withdraws) 
____ Participant Tracking: IDs, Calendar, Study Enrollment 
 
Nursing Facility (Site)  
 
____ Discuss how to perform the Chart Review 
____ Practice administering the Resident Surveys (baseline, time of sharing, 90 days) 
____ Discuss the logistics of administering the Staff and Family surveys in care conference 
____ Discuss how to set up Care Conference Audio Recording and Equipment 
____ Practice administering Staff and family surveys (baseline, time of sharing, 90 days) 

 
12 
Data Analysis 
 
____ Audio Transcription and verification  
____ REDCap – how to run reports (e.g. accrual reports) 
____NVivo – (e.g. uploading documents, coding) 
 
 

 
13 
Chapter Three  
Eligibility, Recruitment and Enrollment   
 
 
Eligibility Criteria 
 
Use the Eligibility Checklist (Appendix A) to document whether selected residents are 
eligible to participate in this study or not. 
 
 Resident Inclusion Criteria 
We will include assisted living (AL) residents in addition to nursing home (NH) 
residents. Inclusion criteria:  
• Identified as having Alzheimer’s or related dementia (both nursing home and 
assisted living residents).  
• BIMS 8-15 (MDS C0500; nursing home residents only);  
• Makes Self Understood and Understood By Others (medical record forNH 
and AL);  
• reside at the facility at least 2 weeks;  
• identified as a long-term resident;  
• age >65 years; and  
• able to speak English 
 
 Resident Exclusion Criteria 
• Limited communication capacity (e.g. aphasia) 
• Comatose state 
• Severe cognitive impairment (BIMS<7; Understood by others and makes self 
understood > 1).  
 
 Staff Inclusion Criteria 
• Able to speak English 
• Willing and able to watch the videos and participate in short surveys 
 
 Family Inclusion Criteria 
• Able to speak English 
• Willing and able to watch the videos and participate in short surveys (online 
or in person) 
 
Ineligible Participants  
Document ineligible residents using the Eligibility Checklist and include the reason(s) for 
ineligibility.  
 
Change in Participant Eligibility 
   
Need to document if someone becomes not eligible (e.g. control group) after delayed start.  

 
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Role of the Study Coordinators: 
 
Study Coordinators will share responsibility for participant recruitment, enrollment, and 
data collection. The Study Coordinators will share responsibility for data entry, 
management and cleaning. In addition, the Study Coordinators will work as a pair to 
conduct and film the Me & My Wishes videos with residents. The Study Coordinators will 
coordinate editing of the videos with the Video Editor and assist as needed. In addition, the 
Study Coordinators will share the videos with the appropriate formal and informal 
caregivers. Study Coordinators will complete training in study-specific recruitment, 
protection of the rights of human participants and confidentiality, Good Clinical Practices, 
and cultural competence prior to interacting with potential participants.  Other 
responsibilities include: 
 
• Providing a description of the study to eligible residents allowing for questions 
and time to consider participation. 
 
• Describing the background of the study, including what was found in the 
Towsley (2005) study:  
o Many times, residents aren't asked about their wishes.   
o Often, we assume that others already know what we'd want.   
o Advance Directives are narrow in focus and have not shown to guarantee 
that care will be provided as the resident wishes it was.    
o Advance Directives don't meet unmet needs.   
o Conversations are not often passed on to others or recorded.   
o Preferences for care today and at the end-of-life can be a difficult topic to 
discuss.   
o When they do occur, conversations often happen too late or at times of 
crisis or transition such as hospitalization.   
o Advance Care Planning (ACP) is associated with higher quality of life and 
satisfaction with care.   
o ACP is also associated with decreased rates of depression and anxiety 
among bereaved loved ones.   
o Lack of ACP often results in more invasive care than is desired.   
 
• Reviewing the consent forms and obtaining consent from those who wish to 
participate.  
• Scheduling the date video recording will take place and informing NH staff, as 
well as other scheduling.  
 
• Performance of the Chart Review and completion of the Demographic and 
Medical Record Review Forms as described later in this chapter.   
 
 
 
 

 
15 
Staff, Family and Resident Recruitment  
Staff Consent 
 Care Conference Staff 
 
Care Conference Team Consent Letter (Appendix F) 
 
 
Care Conference Staff Consent 
Recruitment of staff members will occur in person. The care conference team members of 
the resident will receive a recruitment letter and staff caregiver consent either in person or 
via email stating the purpose of the study or at a staff meeting or care conference prior to 
video sharing. The SC will explain the study, review the IRB-approved informed consent 
document, and answer any questions the care conference team member might have. Ample 
time will be provided for the staff member to consider participation. A follow-up visit can be 
readily scheduled by the SC. For staff members who agree to participate, we will document 
affirmation of consent. Potential interdisciplinary care team participating in care conference 
will be nurse manager, social services director, dietary manager, nurse’s aide 
 
 
Strategies for Communicating Research to Staff Members. 
Information session in standup meeting  
Attend Resident Council Meeting  
Attend All-Staff meeting 
Approach staff members 1:1 on scheduled time 
• May include positive testimonials if applicable  
 
 
 
 
 
Resident
Enrollment
Me & My Wishes video 
production
Share Video at Care 
Conference
Post Sharing
90 days
Pre-view 
session
Share video 
with resident
Time of Sharing
Baseline Survey
Time of sharing 
Survey
72 hours
90-day Survey
Group 2 
begins
GROUP 2
2nd Baseline 
Survey
SC’s timecode 
video/
create consensus 
grid
Family/Staff 
recruitment 
letter 
sent
Schedule care 
conference 
with NH 
champion
Consent Family 
and Staff
Baseline
Randomization

 
16 
Me and My Wishes: Study Stand-Up Checklist 
• NH Champion preferred day/time to meet weekly/bi-weekly (obtain more than one 
date since we will be juggling a few facilities). 
• NH champion’s preferred introduction schedule. Do they prefer to introduce SC’s to 
residents all at same time or separately after each consent? 
• NH champion speaks to resident with no bias introduced (such as “this resident 
would be a good person for this study”). 
• Only SC’s explain MMW study to resident. 
• Does NH champion know of any additional people coming to care conference that 
are not aware of study? 
• When calling NH champion confirm residents are available for consenting/video 
recording. 
• Ask if there are any recent admissions that would meet criteria. 
 
 
Family Consent and Survey Scripting 
A recruitment letter and a copy of family caregiver consent will be sent either by mail or 
email to the family members identified by the resident stating the purpose of the study and 
that a follow-up phone call will be made. The letter will include information of who to 
contact if they wish to opt out. If the family member declines we can ask the resident if they 
want to share the video with anyone else 
 
 Family (process for contacting/recruitment) 
Family Recruitment and Consent Letters (Appendix G) 
Family Sub Study Consent Letter (Appendix G1)  
 
This process should be practiced with a member of the MMW team prior to live 
implementation.  
 
Hello is this (family member’s name)?—response. 
 
This is (your name) from the University of Utah College of Nursing and the Me & My Wishes project. I 
am calling to verify that you received the letter about the project and to see if you have some time today 
to learn more about the project. Is this a good time?—response. 
 
At this point in the conversation please refer to the Family Consent Cover Letter. Proceed by 
reading the first two paragraphs of the consent.  
 
Does this sound like something that you would be interested in?—response.  
 
If yes: Great, thank you. Let’s take the next few minutes to review more details about the study, your 
participation, and obtain your consent to participate. If you would like, I can send you a copy of the 
consent via mail/email?—response. 

 
17 
Do you have 15-20 minutes now to go over the initial survey?—response.  
 
Proceed to the family baseline survey.   
 
Do you have any questions?—response. (answer questions). If mail/email address is not 
known, obtain for the purposes of sending $5 gift certificate.  
 
Outline the next steps for the participant.  
 
As mentioned in the consent you may watch your family member’s/friends personal video by attending 
care conference at the facility or at the time that we share the video I can send you a link to view the 
video from your home computer and complete a brief survey.—response.    
 
I will also follow-up with you in 90 days to complete the final follow-up survey.—response. 
 
Before we conclude our time together, do you have any questions?  
Thank you so much for your time and efforts to participate! 
 
 
Resident Recruitment 
 
Successful recruitment in research participation relies on several strategies: access to the 
appropriate population, communication and trust building, providing for comfort and 
security, and expression of gratitude. Positive interaction in the NH by Me & My Wishes staff 
will facilitate a working relationship that supports all parties. All staff should remember to 
express appreciation, respect, and flexibility (when able/appropriate) throughout this 
process. 
 
 
• Approach:  
o Gain eye contact with the resident and face them when speaking, at their 
level. If the person has hearing loss, make sure that he/she is wearing 
hearing aids (if available) and confirm that they can hear you. The 
resident may prefer you speak to them on one side, if they hear better on 
that side. Some people prefer to read your lips as you speak to fully 
understand. 
o Pay attention to the tone, pitch and speed of your speech. You may need 
to adjust from person to person. Older adults are a diverse group, and one 
person may need you to speak up and slow down, while the next may feel 
you are too loud at the same level.  
o Hearing aids often pick up surrounding noise and make it difficult to 
concentrate or hear when the TV or other conversations are going on 
nearby. Try to limit background noise and distractions. You may need to 
ask to move to another, more quiet location.  
 

 
18 
• Show Respect: 
o Introduce yourself and the project.  
o Thank the resident for meeting with you. 
o Ask how the resident prefers to be addressed (e.g. Mr/Mrs/Ms. [insert last 
name], first name, or nickname). Do not refer to older adults as 
“sweetheart,” or “honey,” (for example).  
o Ask if now is a good time to talk, and if it is not, plan another time to 
come back. 
o Ask where the resident would like to discuss study participation. The 
resident may share a room with another person. Allow the resident to 
choose whether they would like to speak in a more private location. 
 
Introducing the study and providing the background can be more difficult than it seems. It is 
helpful to write down a general statement that can be used by all research staff when 
discussing the project with residents. An example of this is provided below:    
Me & My Wishes is a project that will study and develop a new approach to 
assist talking about the care preferences of long-term care residents, like yourself, by 
creating a video recorded conversation. Knowing what residents want and don’t 
want is essential for facilities to provide quality care, and it also helps others to 
understand your wishes. We are doing this project because research studies have 
shown that asking about resident preferences and then communicating those 
preferences to staff and family members is challenging. Recording the conversation 
on video provides an efficient and effective way for residents to communicate their 
care preferences, and may align the care they receive with those wishes. The 
conversation will include preferences for today and for end-of-life care, and we are 
giving participants the option to share their videos with the facility staff and/or their 
families if they choose.   
  
  
Barriers to Recruitment and Enrollment: 
 
• mistrust 
• medical concerns 
• indifference 
• sensory and cognitive limitations 
• frail health 
• restrictions to eligibility 
• lack of confidentiality 
• fear of safety 
• scheduling conflicts 
• lack of knowledge 
• language/cultural differences 

 
19 
• inability or unwillingness of researchers to understand community dynamics and 
establish positive relationships with community members and leaders    
 
 
Indifference, disinterest and wavering are the most common barriers in this process. 
Preparing for such comments as:  
 
"I don't think I care about this topic."  
"I'm too tired/old for this."  
"I'm too busy."  
"This doesn't sound like something that would benefit me."  
"I don't know. Is anyone else doing it?"  
"Do you think I should?"  
“I don’t speak well.” 
“I don’t like to be photographed.” 
 
… might help the RA to respond in a productive and positive manner. Potential responses 
may include: 
 
"I want to make sure I explained clearly. Could you tell me what we are asking you 
to do?  
 
“I want to make sure I was clear about the pros and cons of participating in this 
study. Could you tell me what we are asking you to talk about on the videos?” 
 
"Would you like me to come back another time?" 
 
If resident declines 
 
 
Remember that participation in a study, and completion of the materials, can cause anxiety 
for some participants. This may be due to confusion or poor comprehension of data 
measurement tools, general fatigue and/or worry about what the researcher wants, or 
sensory limitations. Advancing age and lower education contribute to increased odds for 
participants to drop out of studies after enrollment. Understand what makes this population 
vulnerable and plan for additional time and support to boost participation. Thoughtful 
consideration of the study environment, research tasks, resources and any special needs or 
obstacles of the study population is necessary.  
 
Refusal to Participate  
Residents may refuse to participate for a number of reasons. Track how many residents 
were approached about participation, and how many refused by documenting the reason for 
refusal on the Eligibility Checklist and in the Participant Tracking and Refusal form. 

 
20 
Especially for those who decline for not wanting to be photographed/filmed, ask if Me & 
My Wishes was offered in a different format (e.g. audio), would their interest in talking 
about their preference change. For example, Currently, we do not offer MMW in other 
formats and I understand that you do not wish to be photographed. We are trying to 
determine if future projects should offer MMW in different formats. If we offered MMW in 
a different format (e.g. audio), would that have changed your interest?  
 
 
Resident Enrollment 
 
A 3-step process will be used to enroll residents: 2) NH champions will be identified to 
introduce the SCs to residents who meet the eligibility criteria, 2) SC will consent the 
resident; consent includes a teach back component allowing residents to state participation 
requests in their own words. Residents unable to complete teach back component or with 
surrogate decision makers will be excluded, and 3) 1) SC will review medical record to 
ensure residents meet inclusion criteria.  
 
The Resident Consent and Authorization Document (Appendix C) reviews in detail the 
background of the study, purpose, procedure, risks, benefits, confidentiality, person to 
contact with questions, voluntary nature, costs and compensation, authorization for use of 
protected health information, and includes a signature with name and date. It is appropriate 
to paraphrase this document for the participant, however the individual may request to read 
it on his or her own or have the entire document read aloud to them. If paraphrasing, 
bundle the certain information together, such as contact information. Also, be sure to take a 
break after each section and remember to ask if the resident has any questions so far. It may 
be necessary to disclose who is funding the project and the number of participants if you are 
asked. If enrolled, a copy of this document (signed) is to be left with the resident at the close 
of this encounter.   
 
 
 Enrollment Tips: 
 
• Practice the recruitment and enrollment process with the team, each taking a turn 
being the RA and the resident. Complete at least 4-5 sessions practicing. Feedback 
on these practice sessions from an outside perspective (third person) is also very 
helpful.  
• Be broad about the study topic when describing the project.   
• Use a range of examples to demonstrate the importance of the study (e.g. “Some 
people have made these wishes clear to their family and caregivers, but others have 
not had this opportunity. We want to have participants from both sides of the 
spectrum represented.”). 
• Pay attention to the language that is being used (e.g. using the words “activities” or 
“surveys” vs. “test”; “feeling upset,” “uncomfortable” or “bothered” vs. “stressed” 
or “traumatized”; emphasizing that the resident can volunteer to participate, etc.).   
• Express and highlight confidentiality, voluntary participation.   

 
21 
• Interruptions may occur, such as the resident may need to take a break or use the 
restroom. Anticipate how to respond and what to do such as contacting facility staff 
and excusing yourself from the room if the resident prefers you to.    
• Focus on the creation of a video for person-centered care rather than the possibility 
of sharing that video early on in this process. This is a novel project focused on the 
patient’s preferences.  
• Use the teach-back method to ensure the resident understands (e.g. “I want to make 
sure I explained what participating in the study means, what is your understanding 
of what I have just told you about this project?” 
• Express gratitude and thank the resident for their time.   
 
 
Chart Review 
Once the consent is signed, the Demographic and Medical Record Review Forms are used 
to document selected demographic and clinical information obtained from the resident 
chart. To obtain this information we will need to review the resident’s Electronic health 
record. Sometimes, depending the facility, POLST forms or other advance directives are 
kept in hard copy at a location in the facility (e.g. nurses station).  
 
When and how will charts that will need to be reviewed get identified and by whom? 
- 
PI/Study coordinator (SC) will work with administrator to obtain a temporary 
password to EHR to start the process of data extraction 
- 
Study coordinators will notify administrator ahead of time, before arriving to the 
facility, about needing to use EHR for data extraction 
- 
Charts to be reviewed will be identified after Eligibility Criteria Checklist form 
and obtained consent for the Me & My Wishes Study from the resident is 
completed 
- 
Data extraction happens before video recording begins 
Where will the SC review the chart to complete data extraction? 
- 
Study Coordinators will request a private place in the nursing home to review 
chart and extract data; if login info is provided to access files offsite, chart reviews 
will be conducted in a private space 
- 
Study Coordinators will not open other files or charts in EHR other than to find 
the data/identifiers needed (see page 2) to complete the Demographic and 
Clinical Data form for the study. 
After data extraction… 
- 
After SC completes reviewing the chart and extracting data, SC will log out from 
the resident chart.   
- 
If SC cannot find the data/identifiers needed, she will communicate with the 
administrator or resident care manager.  *Note: this will be done only when it is 
absolutely needed and as a last resort to keep interfering with the routine work of 

 
22 
the NH to a minimum.  Data that cannot be found on the chart such as education 
level can be obtained from the resident before video recording begins. 
Confidentiality of data 
- 
Only study ID number will be used in the Demographic and Medical Record 
Review forms and surveys 
- 
The hard copy will be kept in a locked cabinet and will be transferred to RedCap 
which is password protected and in an encrypted computer 
- 
Only PI, co-investigators and research team will have access to the extracted data 
- 
The de-identified extracted data will be stored in a locked cabinet at the College 
of Nursing.  
List of data/information to be extracted from the resident chart: 
- 
Age 
- 
Gender 
- 
Education 
- 
Pay source 
- 
Marital status 
- 
Insurance 
- 
Diagnoses 
- 
Mood 
- 
Level of care 
- 
Length of stay 
- 
Presence of documents such as Advance Directives, POLST, or Code Status  
- 
Presence of goals of care conversations (may be found in nursing/social services 
notes). Document location of where found on form (facilities may differ on where 
this type of information is located).  
 
Tips where to look for the data in the EHR: 
- 
Demographic form 
- 
Kardex 
- 
Care plan 
- 
Face-sheet 
- 
MDS 
- 
Documents  
- 
*Refer to FAQ for more tips 
 
Frequently Asked Questions (FAQ) during data extraction time: 
1. I cannot find information about education anywhere in the chart? 

 
23 
This is common. You can ask the resident after video recording. 
 
2. I found the racial background information but not the ethical background on the 
chart? 
You can ask the resident about her or his ethnic background before video 
recording begins. 
 
3. What is the difference between ‘pay source’ and ‘Insurance’? 
The demographic and clinical form gives you option about what to fill out.  
Most NH residents have Medicaid and/or Medicare.  But you will need to 
find that information in the chart.  And then you will need to see if the 
resident also have other private insurance (e.g. Elderplace or a type of 
Medicare Advantage). 
 
4. The resident has a list of diagnoses (old and current) and I’m not sure if I need to 
write each one of them on the form? 
Include at least 10 diagnoses on the form. If available, you can ask a clinician 
which are most relevant. You may have to make a judgment call about which 
DXs to include. 
 
5. I found several admission dates on the chart; which ones do I write on the form? 
We will collect the initial admission date and the most recent admission date, 
look at the chart carefully and make sure you have the correct dates. If the 
original date and most recent date is the same, enter the same date for both. 
 
 
6. Do I count the length of stay from the most recent admission date? 
We track two admission dates (initial admission date and most recent 
admission date). Please calculate length of stay from both these dates.  
 
7. What is the best way to find the Advance Directive information? 
 This depends.  Some charts have this information on the demographic tab and 
Documents tab and some only have this information on the POLST form.  You 
will need to look carefully in multiple places.  POLST may be a separate 
document on its own.   Once you find the form, you will need to look at it 
carefully to find the rest of the information.   
 
8. I found the care plan but I’m not sure if the goals for the care are consistent with 
resident preferences. 
You may or may not find evidence of resident preferences written on the care 
plan.  Review the care plan carefully and look for any evidence that is consistent 
with the resident preferences such as resident statements – this may be written in 
quotes. 

 
24 
 
9.  Could there be any other place where the resident preferences is documented? 
Yes. There may be a standardized document that has the resident preferences.  If 
the facility has such as form, you will need to include the source and location of 
information. 
 
10. When I do a 90-day follow-up data extraction on the same chart, how do I get access 
to the chart and what is the procedure? 
You will need to notify the NH administrator ahead of time about your intent 
and when you will be at the facility.  Other than that, you will follow the same 
procedure outlined on the data extraction protocol for initial Demographic and 
Medical Record Review Forms. 
   
Participant Confidentiality 
 
Participant identification (ID) numbers will be assigned for all individuals approached to 
track those who enroll and those who decline. Study sites will be randomly assigned to an 
intervention or wait-list control group. Use the REDCap database to track all individuals 
(even though who decline). This number will be used instead of the participant’s name on 
all forms and tracking. Write the participant ID on the top right hand corner of all 
documents except for the consent forms.  
 
 
Data Security  
 
 Documents  
 
Consent forms are stored separately from all other recruitment and enrollment 
 
documents, including surveys where appropriate.  
 
 
 
 Audio Recordings 
Audio recordings are to be uploaded to the appropriate folder on UBox, then deleted 
from the audio recorder. Audio recordings are deleted once transcription has been 
completed, compared to audio recording, and finalized.  
 
 Chain of Custody Documentation 
Use the Chain of Custody forms to document exchange of the audio recorders, 
laptops and video equipment. The form must be filled out completely, including the 
name of the person in custody of the equipment and the dates in which the 
possession occurred.  
 
 
 
 
 
Withdrawal of Participation /Attrition 
Document any withdrawals of participation in REDCap along with reason.  

 
25 
 
Chapter Four 
Administering Surveys 
 
Surveys will be administered to residents, staff and family at three time points (baseline, 
sharing/within 72 hours of sharing, and 90 days post sharing).   
 
Resident Surveys  
The Resident Baseline Survey will need to be collected at the time of enrollment and read 
aloud to the resident. Follow same procedures for time of sharing and 90-day surveys.  
 
Care Conference Staff Surveys (Time of sharing the video)  
The Care Conference Staff Baseline Survey is provided at the time of enrollment (at a staff 
meeting or care conference prior to video sharing).   
 
Family Surveys  
The family baseline survey will need to be completed at the time of enrollment. Except for 
consent, follow same procedures for completing time of sharing and 90 day surveys. 
 
 
Care Conference Staff and Family Compensation 
Facility staff and family members are compensated with a $5 gift card following the 
completion of each survey taken. If family are not present at care conference, their gift card 
can be mailed/emailed.  
 
 
Care Conference Audio Recording and Data Collection Procedures 
Care conference at the time of sharing will be audio-recorded using two audio recorders.  
Most likely, staff and family caregivers will have completed the consent process at the time 
of the care conference meeting when the video is shared. In the event that an individual has 
not been consented (e.g. new staff to the care conference team), we will meet with the 
individual in a private space to review the recruitment letter and caregiver consent and upon 
agreement the informed consent process will be completed prior to starting the meeting.  
Care Conference Video Sharing and Survey Collection Guidance 
Briefing points for team member facilitating video sharing and discussion  

 
26 
• SC turn on/off 2 audio recorders. 
• Let participants know video is approx. 20min, opportunity for discussion at end of 
video facilitated.  
• At end of video sharing the care conference team member facilitator will prompt 
conversation with care conference participants to identify the most important aspects 
of the video to be discussed and addressed in the care plan. 
• At end of video/discussion, please give each participant a post video sharing survey 
(staff or family member surveys depending on who is present). Once completed 
please collect and put in a sealed envelope 
• Please give the envelope and audio recorders to the SC who will be waiting outside 
the room 
• Provide gift cards for staff and family members 
 
 
 
 

 
27 
Chapter Five  
  
Facilitating the Conversation   
   
Role of the facilitator: 
 
 
While any one can have this type of conversation with an older adult, there are a few 
things to be aware of when in the role of facilitator. It is common to feel like there needs to 
be a resolution; a way to address the resident’s wish not to have any treatment or to offer 
solutions when further discussion or a change in the advance directive is warranted. For the 
purposes of this study, however, the main objective is to enhance communication and 
promote conversation. Be aware of your own background, opinions and experiences and 
reflect on how that might affect this role. The facilitator of the Me & My Wishes conversation 
must possess the following attributes: 
 
 
• Knowledge:  
o Basics of nursing homes and end-of-life care and processes.  
o Physical aspects of ageing and the care of older individuals.  
 
• Modeling: 
o Demonstrate warm, compassionate and patient communication. 
o Attention - Acknowledge the individual by showing appreciation and respect. 
Show affection by providing comfort and presence.  
o Acceptance of the person and their preferences. 
 
• Skills: 
o Listening skills. 
o Self-awareness. 
o Flexibility. 
 
• Values: 
o Empathy. 
o Genuineness. 
 
• Style: 
o Use personal communication style to enhance authenticity. Emotions of all 
kinds may be triggered (sadness, happiness, laughter, joy, fear, anger).  
 
  
 
 
 
 
 
 
 

 
28 
 Use the following checklist to guide the facilitator training process: 
 
  
 Create a training schedule that includes the following steps in order: 
 
 
1) Review of the Conversation Guide as a group. Practice reading questions and         
incorporating the probes. 
 
2) Practice facilitating with three people, each take a turn being the facilitator and the 
 
resident, using resident roles (see below). Repeat this process at least 2-3 more times. 
 
3) Practice facilitating with three people: the main facilitator, a person to act as the 
 
resident, and a person to act as note taker to provide feedback. Repeat at least 1-2 
 
more times. 
 
4) Practice facilitating with Dr. Towsley present. 
 
5) Dry Run of entire process with four people: the main facilitator, the main person 
 
who will be consenting/enrolling participants, a person to be the resident, and 
 
a person to take notes. 
 
6) Dress Rehearsal of the process with an older adult volunteer. 
 
 ____ Review the following interview tips, as well as the process for administering the 
 
Conversation Guide below.  
 
 ____ Discuss potential challenges, when to make referrals, and other concerns in case of 
 
unanticipated problems such as adverse events. 
 
 
 
Resident Roles for Practice Sessions: 
1) Young Old (persons aged 65-75) 
2) Oldest Old (persons aged 85+) 
3) Sensory Impairments – (e.g., vision, hearing) 
5) Mild to moderate cognitive impairments 
 
 
 Interview Tips: 
• Show respect 
o Ask how the participant prefers to be addressed (e.g. Mr/Mrs/Ms. [insert last 
name], first name, or nickname). Do not refer to older adults as “sweetheart,” 
or “honey,” (for example). 
• Provide for comfort and security 
o Offer water, or tissues as necessary. 

 
29 
o Inform the participant that they can take breaks at any time. May suggest to 
complete recording at a different time. 
o Inform the participant about next steps (i.e. debriefing interview, video-
editing and showing, etc.). 
• Express gratitude 
o Thank the resident for participating and for their willingness to share their 
time and information. 
o Remind participant that they will receive a copy of the edited video and we 
will be contact when ready for their approval/review. 
 
 
Process for Administering the Conversation Guide: 
 
Note: When facilitating the conversation, it is important to stop and take a break 
after each module. This not only gives the resident time to take a break, but is necessary for 
the video-recording process as well. Stop the tape and allow the resident to get a drink of 
water or use the restroom while the next module is set up.  
 
 
 
The Me & My Wishes video consists of four modules:  
 
1) About Me 
2) Preferences for Today 
3) Preferences for Medical Intervention and End-of-Life Care 
4) Afterthoughts  
 
 
After greeting the participant and setting up interview, read the introduction to the 
Conversation Guide aloud. Begin the interview by introducing Module 1: About Me. Then, 
proceed to the first question as outlined below on the conversation guide.  
 
 
Notes on Modules:  
• About Me. The first module includes introductions, short biographies, and may 
include a history of their family, work or significant life events. 
• Preferences for Today. In this module, desired caregiver approaches may be 
included, as well as what is important to residents while living in the NH.  
• Preferences for Medical Intervention and End-of-Life Care. The third module 
includes care preferences should the resident become sick or near the end-of-life. 
Questions include preferences for being transferred to the hospital, use of 
medication, and psychosocial preferences. This module may also include what 
residents want their family or staff to know and who they would want to speak 
on their behalf.  
• Afterthoughts. The final module includes after death preferences, such as the 
request for burial or cremation.  
 
 

 
30 
 
To complete the interview, read the conclusion aloud. If necessary, identify resources 
for follow-up intervention including meeting with the NH Social Service staff if there are 
emotional concerns or if the participant would like to re-visit their advance directives.  
 
 
Potential Challenges: 
 
• Communication Styles of Residents 
o Tangential Speaking 
o Emotional responses, etc.    
• Questions/Misinformation   
o Referrals Process 
• Red Flags  
o Highly emotional (sad, depressed, angry) 
 
 
Fidelity 
 
Using fidelity checklists, a co-investigator will review video recordings (10% of videos in 
both the intervention and wait-list groups) using our protocol to validate the inclusion of 
critical elements and note unusual circumstances. 
 
   
 
 
 

 
31 
Chapter Six   
 
Video Production   
   
 
Video Recording 
Timeline   
Setting up the room 
   
Video Editing 
Decision Rules 
 
Steps for Coding Video in Preparation for Editing  
Watch the video 
Watch the full video (all four modules) before beginning individual grid. This is important 
to see the “big picture” and understand the resident’s preferences and personality. 
 
Individual Coding  
Within one week from video recording complete individual coding grid 
1. Access the Individual Coding Grid Template in Box under Editing Resources and Logs.  
On the top left hand corner of the template, fill in the participant ID and the reviewer 
name and date. 
a. In UBox, open the folder called Video Production; select Video Recordings, then 
open the folder with the video number you are coding.   
b. After watching the video, you are ready to begin coding. Begin with the video 
that has the smallest sequential number.  Example:  MVI_0022 is the video 
for the first module “About Me”, and MVI_0023 will be the second module 
video.  There should be 4 videos for each participant.  
c. Review the questions in the left-hand column that apply to that module. 
When you listen to the video, keep these questions in mind as you select the 
participant’s answers that you think answer the questions.   
2. Determine what clips to keep (repeat this process for all four modules) 
a. Document clips that are to be included in the middle column (heading Yes-
Keep) in the final video using the following format: 
i. Begin with the time stamp the segment is to begin and the first few 
words of the clip. 
ii. On the next line put the end time stamp followed by the last few words 
of the clip and the word Stop. 
iii. Precision of the exact start and stop times and words becomes very 
valuable for the individual consolidating the coding, and helps the 
video editor. 
Example: 
09:37 What is important for 
    09:57 around with them. Stop. 

 
32 
b. If you think that participant’s answer requires the inclusion of the 
interviewer’s question to provide context, then start the clip with the time 
when the question begins. 
c. If you think that a question should be captioned in the video, then put a lower 
third graphic and the facilitator question in the first column next to the 
corresponding time stamp. For example, “L3 Graphic: (FAC): And how would you 
describe your health?". 
 
d. Concepts that are repeated, phrases that you have questions about, or 
anything that you want clarified, should be noted the third column under the 
heading Notes. Also in this column identify the video module number at the 
top of each section (example MVI_0023) Place comments across from the 
corresponding time frame in the Yes-Keep column and note the start and stop 
times of the clip you are referencing.  Here is an example: 
i. 02:12-02:35 Long pauses in this section, comments are restated in the 
following clip.  
ii. Information for the third (far right side) column may include the 
following: 
1. Explanation regarding why clips were deleted (e.g. talking 
about roommate). 
2. Questions for review in consensus meeting or by Gail. 
3. Identifying repetition in resident conversation 
4. Noting a clip you feel strongly about including  
5. Relevancy to the question and resident preferences 
6. How the information speaks to who he/she is as a person 
7. Any other information or insights you would like noted 
3. Each coder will calculate the time for their edited clips (total time and time for each 
module) and record it in the right column. Use a timecode calculator to calculate clip 
durations. Record the totals from each module for a grand total at the bottom of the 
document. Use time calculator to add total clip times. 
a. Keep overall time to 18 minutes or less. 
b. Make sure to mark the clips that are more important, as well as the clips you’re 
willing to part with. This will help cut down the time if someone goes over 20 
minutes. 
4. Decisions about redundancies in video production process/coding. 
a. We will note redundancies as captions at specific time points. This essentially 
means that when a resident talks about something multiple times throughout the 
video, the coders will decide upon the time point that expresses that preference 
the best and put the caption there. Other references to that same preference can be 
cut but track the number of times the preference was stated. Noted redundancies 
should only be stated preferences.  
b. On the coding grid, coders will write down the timestamp where each caption 
should go, as well as what the caption should say. This can be noted in the notes 

 
33 
section on the final consensus grid, under the question that asks about 
redundancies.  
c. The purpose of a & b above is to ensure the editing process does not remove the 
emphasis the resident placed on issues that were so important they were 
mentioned repeatedly.  
i. Include the module number and time stamp where the comment would be 
most appropriate. 
Example:  
Module 2: 08:33 She stated five times that she enjoys painting and it is 
important to her quality of life. 
5. Upload the Coding Grid  
a. Upload the grid to UBox in the file labeled Participant View Review Grids – Your 
Name.  Name the document Grid 0000-00-00_YourName Comments (with the 
0000 changed to the participant number).  
 
 
Consensus Meeting 
Two weeks from video recording to have a consensus meeting 
1. Skype for Business meeting: All team members who created an individual grid will 
participate in the consensus meeting, with one person acting as the Meeting Leader.  
a. All individual coders will meet via Skype to review the clips coded: clips 
kept/deleted.   
b.  The meeting leader will pull up a copy of their individual grid and rename it as 
the consensus grid while the other team members have their individual grids 
pulled up. 
c. The leader will edit the consensus grid during the meeting to reflect the decisions 
that are made by the team on what to keep and what not to keep by modifying 
start and stop times, wording, and by deleting unwanted clips. 
d. The team will look at each time clip and discuss it. Keep in mind time totals from 
each coder; in cases where the times may be too long, identify as a team places 
where cuts can be made if needed to keep the final video under 18minutes.  
During consensus meeting, also discuss notes and comments as well as 
redundancies from the last column and the bottom of the page.  
i. Some clips will require watching again, and some will just need to be 
talked about 
 
Completing Final Grid 
Following the consensus meeting, the leader will: 
1. In the upper left corner of the template, fill in the participant ID, Reviewers names 
(designate leader), and the date 
2. Check that all clips are formatted correctly 
3. Calculate the consensus times for each individual module and for the total video; also fill 
in times for the raw footage of each module and the total video footage. 
a. The final edited time on the Participant Tracking and Refusals Sheet is the final 
edited time that the editing team produced.  

 
34 
i. Any discrepancies in time would be due to adding slides, captions, etc. 
b. Establishing if a clip is agreed upon 
i. How can we capture the same content in the shortest amount of time? 
ii. Number of raters: Did all coders that created a grid add this clip? If yes, 
then it is agreed upon. 
iii. Content in the clip: Are the coders trying to encompass the same content 
in the clip If yes, it is agreed upon. 
4. Copy and paste any redundancies to be noted with the information regarding where the 
comments should be included 
5. Include any notes to Gail or video editor 
6. Upload the consensus grid to UBox in the file Final Consensus Grids and name it using 
the following format: Grid 0000-00-00_Final (with the 0000 changed to the participant 
number). 
 
 
Editing Process 
Editing timeline: two weeks  
 
 
Formatting for Final Coding Grid Title: 
Template: Grid XXXX-XX-XX_Final.docx 
Example: Grid 1012-00-00_Final.docx 
 
 
 
 

 
35 
Chapter Seven 
 
Family 
 
Family Post Video-Viewing Survey (REDCap) 
How to send a resident video and follow-up survey using REDCap 
 
Log in to REDCapSelect/click on Me & My Wishes: Feasibility and AcceptabilityIn 
the left tool bar select/click on Record Status DashboardIn column 7 of the spreadsheet 
find Family Post Video-Viewing SurveyScroll down to the appropriate participant/record ID 
numberclick on the clear circle (the following screen will appear)  
 
Click on the drop-down tab labeled Survey options Select Open Survey a window web 
browser will open with the participant’s video and follow up surveycopy and paste the 
URL into the following email template: 
 
Dear (Name) – 
  
Below is the link to the Me & My Wishes video of your family member/friend. Please view the video and complete the 
corresponding survey. You may open the survey in your web browser by clicking the link below: 
 
Family Post Video-Viewing Survey 
 
If the link above does not work, try copying the link below into your web browser: 
[insert link]  
  
Please contact me or Gail (cc’d on the email) if you need help accessing and viewing the video. 
 
This link is unique to you and should not be forwarded to others. The family consent form reviewed with you on the 
telephone is attached.   
  
Thank you so much! 
  
Name 
Title 
 
Make the necessary updates—participant name, and your name and title Remove the 
survey/video link in the template (highlighted yellow)Replace with previously copied 
URL Create a hyperlink for the section highlighted in pink (see the next section for 
instruction on how to create a hyperlink)Send email. 
 
 
Creating a Hyperlink in Outlook 
 
Select the following text in the email Family Post Video-Viewing Survey  
In the email window task bar, next to font color, (show below) click on the globe icon with 
chain. Paste the URL and click ok You have created a hyperlink!--> 
 
 

 
36 
Chapter Eight 
 
 
Unanticipated Problems and Events 
 
 
 
Unanticipated Problems 
The University of Utah requires investigators to report all potential unanticipated problems 
and events to the IRB. Unanticipated problems (UPs) are defined as any incident, 
experience or outcome that meets all of the following criteria: 
 
• Unexpected (unforeseen by the researcher or the research participant) in terms of 
nature, severity, or frequency, given the research procedures and the subject 
population being studied; 
 
• Related or probably related to participation in the research, or if the event or problem 
probably or definitely affects the safety, rights and welfare of current participants; 
 
• Suggests that the research places subjects or others at a greater risk of harm 
(including physical, psychological, economic or social harm) than was previously 
known or recognized. 
 
Definitions:  
Adverse event: An event in which care resulted in an undesirable clinical outcome-an 
outcome not caused by underlying disease-that prolonged the patient stay, caused 
permanent patient harm, required life-saving intervention, or contributed to death. 
 
Protocol deviation: A departure from study procedures as specified in the IRB-approved 
protocol. Examples: 
 
• Protocol deviation: Consenting someone who should not have been 
consented (not eligible)   
• Protocol deviation: Survey completion by someone who was not eligible to 
participate.  
 
Reporting 
Report unanticipated problems and events to the PI immediately who will promptly report 
to IRB in accordance with University of Utah IRB policies.  
 
 

 
37 
 
Chapter Nine 
   
Data Collection and Management 
 
 
   
Care Plan Meeting Audio Recordings 
 
Formatting for Final Transcription Title: 
Template: XXXX-XX-XXTYPE_Final.docx 
Example: 1015-00-00CC_Final.docx 
 
   
 
Quantitative Data   
   
Participant Confidentiality and Tracking - IDs 
   
Orientation to Research Electronic Data Capture (REDCap)  
 
To create surveys, access the Online Designer Tool on the Project Setup page.    
 
Surveys  
• Review for completeness 
• Enter into REDCap 
• See Data Code Book for handling:  
 
Incomplete Surveys 
 
Missing Surveys/Information 
 
Two answers 
 
Audit Schedule –review data every week at team meetings 
 
 
 

 
38 
References   
   
American Bar Association. (2015). Living wills, health care proxies, & advance health care 
directives. American Bar Association. Retrieved from 
http://www.americanbar.org/groups/real_property_trust_estate/resources/estate_p
lanning/living_wills_health_care_proxies_advance_health_care_directives.html  
 
Benson, W. & Aldrich, N. (2012). Advance care planning: Ensuring your wishes are 
known and honored if you are unable to speak for yourself, critical issue brief. Centers for 
Disease Control and Prevention. Retrieved from 
http://www.cdc.gov/aging/pdf/advanced-care-planning-critical-issue-brief.pdf   
 
Dobalian, A. (2004). Nursing facility compliance with do-not-hospitalize orders. The 
Gerontologist. 44(2): 159-165.   
 
Koren, M.J. (2010). Person-centered care for nursing home residents: The culture-
change movement. Health Affairs. 29:2.  
 
National Institute on Aging. (2015, August). Health & aging: Advance care planning. 
National Institutes of Health. Retrieved from 
https://www.nia.nih.gov/health/publication/advance-care-planning  
 
U.S. National Library of Medicine. (2015, December). Nursing homes. Medline Plus. 
National Institutes of Health. Retrieved from 
https://www.nlm.nih.gov/medlineplus/nursinghomes.html  
 
Washington Health Care Association. (2015). All about care conferences. WHCA. 
Retrieved from http://www.whca.org/directory/all-about-care-conferences/  
  
  
  
  
  
 
 

 
39 
Abbreviations  
  
 
ACP (Advance Care Planning)  
CITI (Collaborative IRB Training Initiative) 
DNH (Do Not Hospitalize)  
DNR (Do Not Resuscitate)  
EOL (End of Life)  
IRB (Institutional Review Board)  
NH (Nursing Home)  
NPCRC (National Palliative Care Research Center) 
POLST (Physician Orders for Life-Sustaining Treatment) 
RA (Research Assistant) 
REDCap (Research Electronic Data Capture) 
VP (Vice President – University of Utah)