Social Support and Stress Reduction for Caregivers of Young Adults With IDD
Phase: NA
Conditions: Burden, Caregiver
Sponsor: University of Kansas Medical Center

 
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Social Support and Stress Reduction for Caregivers of Young Adults With IDD 
Study Protocol 
 
NCT Number: NCT05938998 
Unique Protocol Id: STUDY00149679 
Version date: 6/21/2023 
Principal Investigator: Amy Bodde 
 
 

 
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University of Kansas Medical Center  
RESEARCH PROTOCOL INVOLVING HUMAN SUBJECTS  
 
Version date: 6/21/2023 
Principal Investigator: Amy Bodde 
Study Title: Social Support and Stress Reduction for Caregivers of Young Adults with IDD   
Co- Investigator(s): Bethany Forseth, Lauren Ptomey 
 
 
I. 
Purpose, Background and Rationale 
1. Aim and Hypotheses 
 
Being a caregiver to an individual with intellectual and developmental disabilities (IDD) can be stressful and 
may result in adverse health effects for the caregiver. Additionally, caregivers of individuals with IDD must 
navigate new support systems when the young adult with IDD reaches a transitional age and loses school-
based supports. In conjunction with the Chef BoyID study (IRB # 148424), we propose a 12-week study which 
will consist of 12 group-based sessions offered to the caregivers of transitional age individuals with IDD, some 
of whom may be enrolled in the Chef BoyID study. These sessions will cover 1 hour of social support and 
resource provision, and 1 hour of stress reduction through yoga to help with the transition.   
1. Evaluate factors impacting the feasibility of recruitment, retention, assessment, and satisfaction of a 
caregiver intervention providing social support and stress reduction.  
2. Measure changes in psychosocial health (i.e., stress, social support, family empowerment), physiologic 
stress (salivary cortisol) and lifestyle health behaviors (i.e., physical activity, sleep) of caregivers 
participating in the intervention.  
3. Assess impact of caregiver participation in the intervention on health behaviors of the young adult with IDD 
(i.e., physical activity, diet, sleep). 
a. Hypothesis 1: Young adults in Chef BoyID who have a caregiver partake in the intervention will 
have improved Chef BoyID outcomes compared to young adults in Chef BoyID who do not have a 
caregiver participating in the intervention.  
b. Hypothesis 2: Reduction in stress of caregivers improves caregiver health behaviors & dependent 
health behaviors.  
 
A. Background and Significance 
 
Family caregivers of youth with IDD are susceptible to poor health outcomes which may be due to the burdens 
and stressors of caregiving (Magaña et al., 2015; Magaña & Smith, 2008; Miodrag & Hodapp, 2010). 
Parenting children with IDD is a rewarding but challenging responsibility that continues throughout the lifespan 
(Grein & Glidden, 2015; Hastings & Taunt, 2002). The perpetual stressors of caring for a child with IDD include 
dealing with challenging behaviors (Drew et al., 2022; Lowe et al., 2007), financial strains (Genereaux et al., 
2015; Parish et al., 2008), frequent advocacy for a child’s needs (Krueger et al., 2019), sleep loss (Marquis et 
al., 2019) and their child’s unique physical and psychosocial development. These responsibilities take a 
physical and emotional toll on parent caregivers (Gallagher et al., 2008; Singer, 2006).  
 
Though caregivers of individuals with IDD will experience several complex transitions that may increase their 
caregiving strains, (Raina et al., 2004; Wang, 2012) the period of late adolescence and young adulthood (i.e. 
18-21 years) is especially challenging (Dyke et al., 2013). Young adults with IDD and their caregivers prepare 
to lose school-based supports at age 21 and must consider and facilitate job opportunities and make decisions 
about living situations (McKenzie et al., 2017). Both formal and informal support needs are high during this 
transition; both of which and are associated with increased caregiver stress (Marquis et al., 2019). Parents of 
adolescents with IDD also report the adolescent years are a time of considerable stress (Young et al., 2018) in 
which they neglect their own health behaviors as they prioritize the needs of their children (Magaña et al., 
2015; Magaña & Smith, 2008). These stressors may manifest as poor mental and physical health. For 
example, a systematic review by Scherer et al., found that parent caregivers of those with IDD are twice as 
likely to experience anxiety and four times as likely to have moderate depression compared to parents of 
children without IDD (Scherer et al., 2019). Limited data suggests that the prevalence of obesity and other 
chronic conditions, e.g., diabetes, hypertension, heart disease etc. are also higher in family caregivers of 

 
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children with disabilities compared with family caregivers for children without disabilities (Bodde et al., 2022; 
Gallagher & Hannigan, 2015; Lee et al., 2017). Previous research implementing yoga or mind-body 
interventions have documented reductions in psychologic and physiologic stress and reductions in stress 
symptoms(Chong et al., 2011; Park et al., 2021; Pascoe et al., 2017). Because the physical and mental health 
of caregivers is associated with the health and wellbeing of their child with a disability (Murphy et al., 2007), it 
is important to assess interventions aimed at reducing stress and providing support for parents during these 
transition years.  
 
B. Rationale 
 
Interventions focusing on providing resources, social support and mind body activities may help to reduce 
caregiver stress and improve their health behaviors (e.g., sleep and activity), and collectively, this may also 
result in improvements in the health behaviors of their young adult with IDD, some of whom may be 
participating in a concurrent physical activity and cooking skills intervention (see Dr. Lauren Ptomey’s study: 
The promotion of healthy lifestyles for young adults with intellectual disabilities, referred to as “Chef BoyID”, 
IRB #148424).  
 
 
II. 
Research Plan and Design 
 
A. Study Objectives 
 
The purpose of this study is to examine the feasibility and initial efficacy of a social support, resources, and 
stress reduction intervention for the promotion of healthy lifestyle behaviors and the reduction of caregiver 
stress and strain. 
 
B. Study Type and Design 
 
This is a single arm longitudinal trial. We will recruit up to 40 caregivers of young adults with IDD. Some 
caregivers will be recruited as their young adult is participating in the Chef BoyID intervention, and some will 
be recruited for a cohort at Down Syndrome Innovations, unrelated to Chef BoyID participation. This is a 12-
week social support, resources, and stress reduction intervention delivered in person to a group of caregivers 
of young adults with IDD of transitioning age at the Center for Children’s Healthy Lifestyles and Nutrition, 
Down Innovations orat the University of Kansas Energy Balance Laboratory location.  Participants will be 
asked to attend one 2 hour group session each week. All sessions will have a 1-hour discussion on resources 
and social support and 1-hour of yoga. All yoga sessions will be taught by 200 RYT certified instructors. 
Outcome assessments will be collected at baseline and after the 12-week intervention. 
 
 
C. Subject Criteria 
 
Inclusion: 1) caregiver of a young adult with IDD 2) self-reported ability to participate in a yoga class with no 
contraindications to participation. Exclusion: 1) Actively participating in another health lifestyles interventional 
research study. 
 
 
D. Specific methods and techniques used throughout the study  
 
 
1. Intervention:  
a. In person, small group instruction: Participants will attend weekly two-hour small group 
instruction sessions at the Center for Children’s Healthy Lifestyles and Nutrition, Down 
Syndrome Innovations, or the University of Kansas Energy Balance Laboratory location.  All 
sessions will have a 1-hour discussion on resources and social support and 1-hour of yoga. 
i. Discussion on resources and social support (1 hour): This session will consist of a 
brief presentation of resources to aid in the transition process for the young adult with 
IDD. In the first session, caregivers will be asked to provide topics of specific interest 
and sessions will be customized to their expressed needs. Examples of topics 
covered include: transportation, employment options, group home options, navigating 

 
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Medicaid waiver, respite care options, health, etc. Time will be provided for caregivers 
to connect with each other, ask questions, and share their own resources and 
experiences. A discussion guide will be provided for each week. 
ii. Yoga class (1 hour): Each yoga class will be taught by a certified yoga instructor (Dr. 
Bethany Forseth or Ms. Jessie Danon). The session will include breathing / warm up 
(~5minutes), asanas/poses (~45min) and savasana/meditation (~10min).  
2.Schedule of Evaluations 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
3. Description of Evaluations  
 
A. Caregiver demographics: contact information, age, gender, relationship to person with IDD, income, 
education level, number of children, employment status, race, ethnicity (Hispanic/not Hispanic)  
B. Anthropometrics: Participants will be weighed in shorts and a t-shirt between 7 and 10 AM, in 
duplicate, on a calibrated scale (Model #PS6600, Belfour, Saukville, WI) to the nearest 0.1 kg. 
Standing height will be measured in duplicate with a portable stadiometer (Model #IP0955, Invicta 
Plastics Limited, Leicester, UK). 
C. Session Attendance: The session leaders will record attendance at weekly sessions. The 
participants will only be considered present if they complete the entire 2-hour session. The outcome 
variable will be the number of sessions attended (count) and percentage of attendance out of the total 
12 scheduled sessions. 
D. Physical activity (accelerometers): Physical activity will be assessed by accelerometer at baseline 
and 12 weeks. Participants will be asked to wear the accelerometer for 7 days and then return in a 
pre-paid envelope. 
E. Cortisol: Physiologic stress will be collected and analyzed through salivary cortisol. Caregivers will be 
provided Salimetrics® collection tubes while at their baseline visit and at the final intervention week. 
They will be asked to collect a sample of their saliva within 30 minutes of waking up, around the same 
time at all time points, and prior to consumption of food or beverages; they will log the exact time of their 
sample and place this in the freezer until their next visit (first day of intervention or post-intervention 
Assessment 
Screenin
g Visit: 
(Day-30 
to Day -
1) 
Baseline: 
KUMC Visit 1 
(Day -14 to 
Day -1) 
KUMC  
Visit 2 
(Week 12-
Week 14) 
Weekly 
Monthly 
Informed Consent Form   
X 
 
 
 
 
Demographics 
X 
 
 
 
 
Enrollment 
 
X 
 
 
 
Anthropometrics 
 
X 
X 
 
 
Session Attendance 
 
 
 
X 
 
Physical Activity – 
Accelerometer 
 
X 
X 
 
 
Caregiver strain 
 
X 
X 
 
 
Perceived Stress Scale 
 
X 
X 
 
 
Physiologic Stress 
(Cortisol) 
 
X 
X 
 
 
Social support 
 
X 
X 
 
 
Family Empowerment 
 
X 
X 
 
 
Sleep  
 
X 
X 
 
 
Satisfaction (semi-
structured interview) 
 
 
X 
 
 
Adverse Events  
 
X 
X 
X 
X 

 
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testing) when researchers will collect the sample. Once collected by researchers, samples will be frozen 
until analysis. The cortisol will be analyzed using an ELISA-based immunoassay analysis by the Disease 
Model and Assessment Core (DMAC) at the University of Kansas Medical Center. The ELISA kit agreed 
upon with the DMAC has a sensitivity of 0.111ng/mL and an assay range between 0.2-10 mg/mL for 
saliva, and has a reliable intra- and inter-assay precision (0.41, 0.58, respectively).  
F. Caregiver strain:  Caregiver Strain will be assessed using the Modified Caregiver Strain Index, with 
minor modifications in wording to reflect care of someone with IDD. The Modified Caregiver Strain 
Index is a 13-question tool that measures strain related to care provision.  
G. Social Support: Social support will be assessed with the Multidimensional Scale of Perceived Social 
Support, which is a 12-item measure of perceived social support from family, friends, and significant 
others. 
H. Family Empowerment: Family Empowerment will be assessed using the Family Empowerment 
Scale, subscales 1 and 2, which assess satisfaction with caregiving and service supports for families. 
I. 
Stress: will be assessed using the Perceived Stress Scale (10 questions). 
J. Sleep: will be assessed using the Pittsburgh Sleep Quality Index. This is a 10-question index to 
evaluate overall sleep quality.  
K. Satisfaction / semi-structured interviews: Semi-structured interviews will be conducted with each 
caregiver within 2 weeks after the intervention to assess satisfaction with the intervention components 
and to gather suggestions for future iterations. Interviews will be recorded and transcribed for analysis 
with Dedoose software Version 9.0.17, (Los Angeles, CA: SocioCultural Research Consultants, LLC, 
2021, www.dedoose.com) 
 
 
F. Risk/Benefit Assessment 
Risks to the caregivers are minimal and may include general muscle soreness or strains from participating 
in yoga, no more than would be expected from participating in exercise in the community. These risks are 
minimized as the yoga program will gradually progress over the 12-week intervention, will include warm up 
and cooldown poses/periods, and will be taught be a certified yoga instructor. Other risks may include 
discomfort in participating in a support group or discussing needs with other caregivers. However, to 
minimize these risks, participants will be assured that there is no obligation to share personal information 
with the support group. 
 
The benefits of participating in a social support, resources, and stress reduction intervention are that 
participants may learn of new resources in the community to assist their transition-age child; they may gain 
social support by interacting with other caregivers and sharing resources; and they may see reductions in 
stress, improvements in physical activity, and improvements in sleep from participating in the yoga portion 
of the intervention. The risks are minimal and the benefits to caregivers are potentially large. 
 
 
G. Location Where Study Will Be Performed 
Research activities will take place at the joint KUMC/CMH funded Center for Children’s Healthy Lifestyles 
and Nutrition,at the University of Kansas Energy Balance Laboratory location or at Down Syndrome 
Innovations. All data will be saved on a KUMC Redcap database, and all study related documents will be 
saved on a KUMC P-Drive.  
 
H. Assessment of Subject Safety and Development of a Data and Safety Monitoring Plan 
The intervention and measurement protocols proposed for this feasibility study pose minimal risk to 
participants. Because of this low-risk status, the data safety monitoring plan (DSMP) for this trial focuses 
on close monitoring by the principal investigator (PI) along with prompt reporting of excessive or serious 
adverse events to the Human Subjects Committee (HSC) at The University of Kansas Medical Center. 
Safety reports will be sent by the yoga instructors to the PI. The PI will be responsible for assembling the 
data and producing these reports. The frequency of data review for this study differs according to the type 
of data, the availability of data collected, and the perceived level of risk. 
 
Data type 
Frequency of review 
Subject accrual (adherence to protocol 
regarding demographics, 
inclusion/exclusion) 
Monthly  

 
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Adverse event rates (injuries/illness) 
Monthly 
Compliance to treatment 
Monthly 
Stopping rules  
Semi-annually  
 
Measurement and Reporting of Subject Accrual, Adherence to Inclusion/Exclusion Criteria 
Review of the rate of subject accrual and adherence to inclusion/exclusion criteria will occur monthly to 
assure that participants meet eligibility criteria outlined in IRB proposal.  
 
Measurement and Reporting of Adverse Events 
Data on adverse events will be reported monthly to the PI throughout this trial. We anticipate that most 
adverse events will be mild in nature and will allow a complete return to the same activities after a short 
period of time; that is, later that day or a day or two later.   
 
Measurement and Reporting of Participant Compliance to the Treatment Protocol 
Compliance to the program will be monitored by attendance to the group sessions.  Compliance to the 
intervention protocol will be reviewed monthly by the PI. 
 
Stopping Rules 
We believe this trial conveys minimal risk. Indeed, increases in physical activity and stress management 
resources are desirable and may convey health benefits. The most likely scenario indicating the need to 
stop the investigation would be a failure to recruit or deliver the intervention as planned. Another issue 
relating to stopping rules for this trial would be new information. It is unlikely that any new information will 
become available during this trial that would necessitate stopping the trial.   
 
III. 
Subject Participation 
 
A. Recruitment 
Caregivers of young adults with IDD in the ChefBoyID study will be recruited and informed about the 
caregiver portion of the study when their young adult is recruited/consented to participate to the 
ChefBoyID study. Caregivers may also be recruited through informational flyers distributed through Down 
Syndrome Innovations’ email list and quarterly promotion materials. Flyers and emails will be modified to 
reflect the addition of the caregiver portion of the intervention.  
Interested caregivers will be asked to contact the study coordinator via email, our website or a dedicated 
study phone number that will be included in all recruitment materials. The study coordinator will contact the 
interested individuals by phone to answer questions and conduct an initial eligibility screening. Zoom 
meetings will be scheduled with those who remain interested and potentially eligible to complete the 
exercise screening session and to obtain informed consent. 
 
B. Screening Interview/Questionnaire:  
Caregivers with a young adult with IDD who are interested in participating in the social support, resource, 
and stress reduction intervention will be contacted to by the research team. Researchers will go over the 
eligibility criteria, and if eligible, review the study and the informed consent.  
 
C. Informed Consent Process And Timing Of Obtaining Of Consent 
Remote video chat sessions (Zoom) will be scheduled with participants who are deemed to be initially 
eligible to participate. This video chat session will provide an opportunity to describe the project in detail, 
answer questions, verify eligibility, and to obtain consent immediately following the consent/assent of the 
participant with IDD (For the ChefBoyID study, if applicable). Prior to the consenting session, the 
participant will be sent the consent form and cover letter through The University of Kansas Medical 
Center’s (KUMC) secure email system. The study team will use the “share screen” option on Zoom to walk 
through each section of the consent document while noting questions that arise and answering these 
questions fully. Participants who are willing to participate in the study will sign and date the consent and/or 
assent forms electronically via REDCap. The study team member who conducted the consent meeting will 
also sign and date after reviewing the signed consent forms and verifying completeness. Study staff will 
provide the participant with a fully signed consent form for their records.  
 
D. Alternatives to Participation 

 
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Participants may join other health or resource programs/lectures or exercise classes. 
 
E. Costs to Subjects 
There will be no costs to the participant or their family for this study. 
 
F. How New Information Will Be Conveyed To The Study Subject And How It Will Be Documented 
New information will be told to the participants before, during, or after their participation in the study by 
email that will be sent to all participants. 
 
G. Payment, Including a Prorated Plan for Payment 
There will be no participant compensation. Travel costs will not be directly reimbursed. 
 
H. Payment for a Research-Related Injury 
There will not be any payment for a research-related injury.  
 
IV. 
Data Collection and Protection 
A. Data Management and Security: Data base creation and management will be performed by experienced 
research staff. Research staff that enters data will be supervised and will be blinded to condition. The PI 
and study coordinator will have access to study data. We have extensive experience in data entry, data 
checking, and quality control from previous and current projects.  The primary database will be maintained 
through KUMC’s Redcap. Additional data (semi-structured interview recordings via Zoom) will be 
maintained a KUMC P-Drive. Prior to transfer of data files to non-study personnel (i.e., for statistical 
analysis), the files will be de-identified. Data will be categorized and entered into separate tables within a 
database, all linked by participant number. All key personnel have current Human Subjects/HIPPA 
certificates. Physical files will be stored in a locked filed cabinet, in a locked office, in our space in the 
KUMC endowment building suite 100.  
 
B. Procedures to Protect Subject Confidentiality 
 
Confidentiality for participants may be at risk during data collection, entry, and storage. However, we will 
use a secure, HIPAA compliant system (i.e., REDCap) to serve as the study database to store all the 
demographic information that may lead to subject identification. All paper records will be kept in a locked 
file cabinet and information will not be released without written permission of the participant, except as 
necessary for monitoring by the KUMC IRB. 
 
C. Quality Assurance / Monitoring: At logical time points, the data will be checked for outliers and 
normalcy. Questionable data (e.g., >3 standard deviations from the mean) will be re-checked for accuracy 
and re-entered if necessary. 
 
V.     Data Analysis and Reporting 
 
A. Statistical and Data Analysis 
To determine the feasibility of social support, resource, and stress reduction sessions, we will calculate the 
mean number of sessions attended, and the percent of participants who attended ≥ 75% of the scheduled 
sessions. Chi-Square or t-tests will be used to compare baseline characteristics (age, sex, BMI, PA, 
income, other demographic characteristics) between participants who attended ≥ 75% vs. <75% of 
sessions. To assess changes in physical activity, social support, family empowerment, stress, caregiver 
strain, and sleep across the intervention, we will compare baseline and 12-week assessments using a t-
test or non-parametric equivalent for paired samples, and we will determine effect size using Cohen’s D. 
Per Aim 3, Hypothesis A of the caregiver intervention, we will compare outcomes of participants with IDD 
(cooking skills, fitness, weight, dietary intake, physical activity) between participants who had a caregiver 
participate and those who did not using independent samples t-tests.  Per Aim 3, Hypothesis B, we will 
analyze correlations between change in caregiver stress (perceived stress scale; cortisol; caregiver strain) 
and caregiver health behaviors (physical activity, sleep) and dependent health behaviors (cooking skills, 
fitness, weight, dietary intake, physical activity). Finally, we will complete a qualitative analysis of the semi-
structured interviews to gain insight on the acceptability and satisfaction with the program.  
 
B. Outcome 

 
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We expect to know the feasibility and acceptability of the social support, resources, and stress reduction 
program for caregivers and determine if we should apply for external funding to complete and adequately 
powered trial. 
 
C. Study results to participants 
Study results will not be sent to the participants. 
 
D. Publication Plan 
The research results will be presented at a conference and published in a peer-reviewed journal upon 
completion of the pilot study. 
 
 
 
 
VI. 
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