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Stress, Anxiety and Coping in Adults with Down Syndrome: An Exploratory Co-Research Study

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Title: Stress, Anxiety and Coping in Adults with Down Syndrome: An Exploratory Co-Research Study
Language: English
Authors: Ashley Scott, Ryan Gould, Liam Quidore, Keryden Koeut-Futch, Emily Bock, Prisha Sujin Kumar, Staci Christensen, Augusta Edouard, Benjamin Golden, Eden Rapp, Kaethe Sigelko, Alexis Sokoloff, Caley Versfelt, Eric Rubenstein (ORCID 0000-0002-9146-4497)
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(1).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 9
Publication Date: 2025
Sponsoring Agency: National Institute on Aging (NIA) (DHHS/NIH)
Contract Number: R01AG073179
Document Type: Journal Articles
Reports - Research
Descriptors: Down Syndrome, Adults, Stress Variables, Anxiety, Stress Management, Coping, Employment Level, Mental Health
DOI: 10.1111/jar.13311
ISSN: 1360-2322
1468-3148
Abstract: Background: At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co-research model to explore anxiety, stress, and coping in adults with Down syndrome. Methods: Our group of researchers and adults with Down syndrome conducted an online survey on mental health for adults with Down syndrome. We analysed quantitative data and thematically grouped coping mechanisms. Results: Sixty adults with Down syndrome completed the survey, mean age was 30 years, and 55% of respondents had some employment. Approximately 80% of respondents reported experiencing stress and 75% reported experiencing anxiety. Employed respondents were more likely to use social coping mechanisms. Conclusion: Soliciting responses from adults with Down syndrome about their mental health can provide valuable insights. Mental health is a concern for people with Down syndrome that should be addressed.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1461056
Database: ERIC
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  Value: <anid>AN0183982466;e0301jan.25;2025Mar26.05:46;v2.2.500</anid> <title id="AN0183982466-1">Stress, Anxiety and Coping in Adults With Down Syndrome: An Exploratory Co‐Research Study </title> <p>Background: At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co‐research model to explore anxiety, stress, and coping in adults with Down syndrome. Methods: Our group of researchers and adults with Down syndrome conducted an online survey on mental health for adults with Down syndrome. We analysed quantitative data and thematically grouped coping mechanisms. Results: Sixty adults with Down syndrome completed the survey, mean age was 30 years, and 55% of respondents had some employment. Approximately 80% of respondents reported experiencing stress and 75% reported experiencing anxiety. Employed respondents were more likely to use social coping mechanisms. Conclusion: Soliciting responses from adults with Down syndrome about their mental health can provide valuable insights. Mental health is a concern for people with Down syndrome that should be addressed.</p> <p>Keywords: anxiety; coping mechanisms; co‐research; Down syndrome; mental health; stress</p> <hd id="AN0183982466-2">Background</hd> <p>Individuals with Down syndrome experience a higher prevalence of comorbidities including mental health conditions compared with peers without Down syndrome (Chicoine et al. [<reflink idref="bib10" id="ref1">10</reflink>]; Rivelli et al. [<reflink idref="bib31" id="ref2">31</reflink>]). Though mental health issues are less prevalent in adults with Down syndrome compared with adults with intellectual and developmental disability broadly (Mantry et al. [<reflink idref="bib26" id="ref3">26</reflink>]; Morgan et al. [<reflink idref="bib28" id="ref4">28</reflink>]), at least 50% of people with Down syndrome experience mental health issues over the life course (National Down Syndrome Society [<reflink idref="bib29" id="ref5">29</reflink>]). Notably, studies have demonstrated an increased vulnerability to mood disorders, personality disorders and dementia among individuals with Down syndrome (National Down Syndrome Society [<reflink idref="bib29" id="ref6">29</reflink>]; Rivelli et al. [<reflink idref="bib31" id="ref7">31</reflink>]; Vicari, Pontillo, and Armando [<reflink idref="bib38" id="ref8">38</reflink>]).</p> <p>Anxiety and depression are concerns for people with Down syndrome. A recent study found that awareness of adverse or stressful events is a predictor of anxiety in adults with Down syndrome (Sideropoulos et al. [<reflink idref="bib35" id="ref9">35</reflink>]). Moreover, individuals with Down syndrome commonly experience depression (Dykens [<reflink idref="bib12" id="ref10">12</reflink>]; Foley et al. [<reflink idref="bib14" id="ref11">14</reflink>]; Mantry et al. [<reflink idref="bib26" id="ref12">26</reflink>]), and those with mild to moderate intellectual disability are particularly vulnerable to this condition (Määttä et al. [<reflink idref="bib25" id="ref13">25</reflink>]). Depressive symptoms experienced in youth have been shown to persist into adulthood among people with Down syndrome, highlighting the enduring impact of this mental health condition (Foley et al. [<reflink idref="bib14" id="ref14">14</reflink>]). Studies about mental health and resilience focus on caregivers and siblings rather than people with Down syndrome (Lee, Neil, and Friesen [<reflink idref="bib24" id="ref15">24</reflink>]) and very few studies ask adults with Down syndrome questions directly about their lived experience (Santoro, Donelan, and Constantine [<reflink idref="bib33" id="ref16">33</reflink>]). It is imperative to enhance knowledge and education surrounding mental health care for individuals with Down syndrome to better inform diagnoses and provide equitable care.</p> <p>People with Down syndrome experience mental health conditions and treatments first‐hand, and their expertise is pivotal for conducting meaningful and impactful research. Excluding individuals with intellectual and developmental disabilities from participation on research teams not only perpetuates inequity but also hampers scientific advancement (Gillespie‐Lynch et al. [<reflink idref="bib17" id="ref17">17</reflink>]). Co‐research, a form of participatory action research, is a methodology that seeks to foster equitable collaboration and involvement between researchers and the communities at the centre of research interests (Bigby, Frawley, and Ramcharan [<reflink idref="bib4" id="ref18">4</reflink>]; McDonald, Schwartz, and Fialka‐Feldman [<reflink idref="bib27" id="ref19">27</reflink>]; Strnadová et al. [<reflink idref="bib37" id="ref20">37</reflink>]). In co‐research, community members intentionally participate in all stages of the research process, from designing the research questions, data collection and analysis and dissemination. The co‐research model can effectively bridge the gap between individuals with intellectual and developmental disabilities and researchers who traditionally study them (Kirova et al. [<reflink idref="bib23" id="ref21">23</reflink>]; Schwartz et al. [<reflink idref="bib34" id="ref22">34</reflink>]). Given the importance of mental health, co‐research methodology is an innovative and necessary approach to best understand mental health issues pertinent to people with Down syndrome.</p> <p>Our team comprised of individuals with and without Down syndrome, conducted an online survey for adults with Down syndrome to understand how they experience and cope with mental health issues, specifically stress and anxiety. We investigated differences in coping strategies and focused on distinctions between men and women and employment status to identify potential factors influencing coping style.</p> <hd id="AN0183982466-3">Methods</hd> <p></p> <hd id="AN0183982466-4">Recruitment and Implementation of co‐Research Team</hd> <p>We recruited seven co‐researchers with Down syndrome who were aged 18 years and older, lived in the United States and have prior research experience. We leveraged professional networks to identify co‐researchers and conducted interviews to share the project proposal, gauge interest and understand previous research experience with potential members. Some examples of questions asked in the interview were 'Have you done research before?', 'Do you have any questions or topics you would like to research' and 'Why do you want to be a co‐researcher?'. To ensure that everyone could actively engage in the project, we met with each co‐researcher to discuss personal strengths, needs and accommodations. Co‐researchers received training in health research, following the Health Research Engagement Toolkit and READI training (Ausderau and Health Research Engagement Development Team [<reflink idref="bib2" id="ref23">2</reflink>]), along with sequential learning modules created by the research team. These modules covered topics like asking research and survey questions, data analysis and communication about research findings. We provided technological support, mailed printed materials and schedule flexibility to foster accessibility. The team met online monthly, and co‐researchers receive a $50 honorarium per meeting for their time.</p> <p>Co‐researchers actively participated across all research stages to explore a health research topic of their own interest. Co‐researchers worked with the research team to make equally valued contributions, exploring how people with Down syndrome experience stress and anxiety, find support and cope with mental health issues through creation of an online survey for adults with Down syndrome. Their contributions included input on survey development and piloting, quantitative and qualitative analysis and dissemination of findings through public speaking and easy read (Foundation for People with Learning Disabilities [<reflink idref="bib15" id="ref24">15</reflink>]) materials.</p> <hd id="AN0183982466-5">Survey</hd> <p>The co‐researcher team collectively chose to focus on mental health for this project. Co‐researchers first voted on broad health topics, listened to a guest speaker presentation on physical and mental health and reviewed online materials (Advocate Medical Group [<reflink idref="bib1" id="ref25">1</reflink>]). Using this information and team discussions, co‐researchers decided to explore stress, anxiety and coping strategies in an online survey for their peers. We were unable to identify survey tools regarding stress, anxiety and coping mechanisms designed for people with Down syndrome that were brief and self‐reported. Therefore, we created our own survey. Research assistants compiled a list of pertinent questions relevant to the study objective and rewrote questions into an easy read format to support individuals with Down syndrome to complete the survey independently. Drawing from online resources (Centers for Disease Control and Prevention [<reflink idref="bib9" id="ref26">9</reflink>]), we discussed accessible definitions of stress and anxiety for the survey. Co‐researchers provided feedback on accessibility and gave suggestions on wording. The team sought outside feedback from professionals who work with the Down syndrome and intellectual and developmental disability population. The co‐researchers piloted the survey and suggested changes to question length and wording, resulting in our final version. Co‐researchers completed the pilot survey alone, then we discussed as a team. We removed questions (how often does your life feel out of your control) and separated into two parts, one focused on stress and the second on anxiety, to improve understanding and accessibility. We also added new response options to our question about common coping mechanisms (squeeze a stress ball, knit, build something and use a weighted blanket).</p> <p>We conducted the survey using Qualtrics. The survey included consent, demographics and questions about stress, anxiety and coping. We also asked if participants had help completing the survey. Participants were provided definitions of stress and anxiety on the survey, which we discussed and agreed upon as a team. Stress was defined for participants as a common feeling of being under pressure or uncomfortable about something happening and anxiety as worry or fear about everyday activities (Centers for Disease Control and Prevention [<reflink idref="bib9" id="ref27">9</reflink>]). Our questions included multiple choice, select all that apply and free response questions necessitating the need for both quantitative and qualitative analysis. Using Qualtrics' 'anonymous link' we were able to ensure that no identifiable data were collected on respondents. A copy of the survey is provided in Data S1. The survey was deemed non‐human subjects research by the Boston University Medical Campus Institutional Review Board.</p> <p>To advertise our survey, we reached out to Massachusetts and National Down syndrome organisations to promote our survey. We also advertised the survey on study team members social media pages and had co‐researchers share the survey within their networks. The survey was open from 4 April 2023 to 30 June 2023.</p> <hd id="AN0183982466-6">Analysis</hd> <p>We reported demographic statistics for respondents, percentage of individuals with Down syndrome who feel stressed or anxious, and the degree to which they feel stressed or anxious. We conducted two‐way chi square tests to assess possible associations between how often people feel stressed and how often people feel anxious.</p> <p>Due to the decrease in participants who submitted full responses, coping mechanism analysis was restricted to those that submitted complete responses. The coping mechanism analysis focused on looking at how individuals with Down syndrome cope with their stress and anxiety. From our response list of popular coping mechanisms, the co‐research team categorised them into four groups based on activity type—(<reflink idref="bib1" id="ref28">1</reflink>) physical strategies (involving movement); (<reflink idref="bib2" id="ref29">2</reflink>) social strategies (interacting with others); (<reflink idref="bib3" id="ref30">3</reflink>) creative strategies (arts and crafts); (<reflink idref="bib4" id="ref31">4</reflink>) thinking strategies (reflection). We report the individuals with Down syndrome who utilise the specific coping mechanisms and the four categories for those coping mechanisms. We stratified our analyses by whether the participant had a job and by sex. We calculated differences in categorised coping mechanisms.</p> <p>The survey included two open‐ended questions for participants to share what people with Down syndrome need for their mental health with friends, family and caregivers or with medical professionals. Though not all participants responded to open‐ended questions, we thought it important to include in survey results. We also asked if and how they had support to complete the survey. Authors read all survey responses and synthesised overlapping themes.</p> <hd id="AN0183982466-7">Results</hd> <p>We had 60 respondents complete the demographic information of the survey. Most respondents (81.7%) were white and lived in their parent's or another family member's home (66.7%) (Table 1). Slightly more than half (55.0%) had any employment, although most with any employment worked only 0–10 h. Assistance with filling out survey was reported by 75% of study participants, noting help with reading, comprehension and filing in answers (e.g., 'read and talked about questions'; 'explain the questions'; 'type the answers'). When assessing those that had data for all questions (<emph>N</emph> = 45) to those that did not (<emph>N</emph> = 15), those with missing data were more likely to be Hispanic, have some college and live in their parents' house (Data S1).</p> <p>1 TABLE Participant demographics for mental health survey of adults with Down syndrome.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">Participants (<italic>n</italic> = 60)</th></tr></thead><tbody valign="top"><tr><td align="left">Age, mean (SD)</td><td align="center">30.02 (8.1)</td></tr><tr><td align="left">Sex, No. (%)</td><td align="center" /></tr><tr><td align="left">Female</td><td align="center">34 (56.7%)</td></tr><tr><td align="left">Male</td><td align="center">26 (43.3%)</td></tr><tr><td align="left">Race, No. (%)</td><td align="center" /></tr><tr><td align="left">American Indian or Alaskan Native</td><td align="center">0 (0%)</td></tr><tr><td align="left">Asian</td><td align="center">6 (10.0%)</td></tr><tr><td align="left">Black or African American</td><td align="center">2 (3.3%)</td></tr><tr><td align="left">Native Hawaiian or other Pacific Islander</td><td align="center">0 (0%)</td></tr><tr><td align="left">White</td><td align="center">49 (81.7%)</td></tr><tr><td align="left">Other<xref ref-type="fn" rid="tfn1" /></td><td align="center">3 (5.0%)</td></tr><tr><td align="left">Ethnicity, No. (%)</td><td align="center" /></tr><tr><td align="left">Hispanic or Latino</td><td align="center">7 (12.1%)</td></tr><tr><td align="left">Education level, No. (%)</td><td align="center" /></tr><tr><td align="left">High school or less</td><td align="center">35 (58.3%)</td></tr><tr><td align="left">Some or finished college</td><td align="center">25 (41.7%)</td></tr><tr><td align="left">Living situation, No. (%)</td><td align="center" /></tr><tr><td align="left">Apartment or house alone</td><td align="center">7 (11.7%)</td></tr><tr><td align="left">Parent's house</td><td align="center">40 (66.7%)</td></tr><tr><td align="left">Apartment or house with roommates</td><td align="center">9 (15.0%)</td></tr><tr><td align="left">Group home</td><td align="center">3 (5.0%)</td></tr><tr><td align="left">Other</td><td align="center">1 (1.7%)</td></tr><tr><td align="left">Job status, No. (%)</td><td align="center" /></tr><tr><td align="left">Have a job</td><td align="center">33 (55.0%)</td></tr><tr><td align="left">0–10 h</td><td align="center">17 (51.5%)</td></tr><tr><td align="left">11–20 h</td><td align="center">11 (33.3%)</td></tr><tr><td align="left">21–30 h</td><td align="center">4 (12.1%)</td></tr><tr><td align="left">31–40 h</td><td align="center">1 (3.0%)</td></tr><tr><td align="left">Does not have a job</td><td align="center">30 (45.0%)</td></tr><tr><td align="left">Help received filling out survey, No. (%)</td><td align="center" /></tr><tr><td align="left">Yes</td><td align="center">34 (75.6%)</td></tr><tr><td align="left">No</td><td align="center">11 (24.4%)</td></tr><tr><td align="left">No response</td><td align="center">15</td></tr></tbody></table> </ephtml> </p> <p>1 * Other, race not listed.</p> <p>Among respondents, 83.0% reported sometimes or often experiencing stress (Table 2). Stress often occurred at home, school or work. Most (64.1%) reported that at times they were unable to handle responsibilities due to stress. In terms of anxiety, 57.7% reported sometimes feeling anxious and 25% reported never feeling anxious. Anxiety was most common at school, work and home.</p> <p>2 TABLE Stress and anxiety among adults with Down syndrome.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">Participants (<italic>n</italic> = 52)</th></tr></thead><tbody valign="top"><tr><td align="left">I feel stressed, No (%)</td><td align="center" /></tr><tr><td align="left">Never</td><td align="center">9 (17.0%)</td></tr><tr><td align="left">Sometimes</td><td align="center">31 (58.5%)</td></tr><tr><td align="left">Often</td><td align="center">13 (24.5%)</td></tr><tr><td align="left">All the time</td><td align="center">0 (0%)</td></tr><tr><td align="left">Where do you feel stressed?, No (%) *</td><td align="center" /></tr><tr><td align="left">At work</td><td align="center">20 (38.5%)</td></tr><tr><td align="left">At school</td><td align="center">7 (13.5%)</td></tr><tr><td align="left">At home</td><td align="center">27 (51.2%)</td></tr><tr><td align="left">In public</td><td align="center">22 (42.3%)</td></tr><tr><td align="left">I am not stressed</td><td align="center">10 (19.2%)</td></tr><tr><td align="left">How often do you feel like you cannot handle everything you have to do *Such as school, work, personal commitments?, No (%)</td><td align="center" /></tr><tr><td align="left">Never</td><td align="center">19 (35.9%)</td></tr><tr><td align="left">Sometimes</td><td align="center">27 (50.9%)</td></tr><tr><td align="left">Often</td><td align="center">5 (9.4%)</td></tr><tr><td align="left">All the time</td><td align="center">2 (3.8%)</td></tr><tr><td align="left">I feel anxious, No (%)</td><td align="center" /></tr><tr><td align="left">Never</td><td align="center">13 (25.0%)</td></tr><tr><td align="left">Sometimes</td><td align="center">30 (57.7%)</td></tr><tr><td align="left">Often</td><td align="center">7 (13.5%)</td></tr><tr><td align="left">All the time</td><td align="center">2 (3.9%)</td></tr><tr><td align="left">Where do you feel anxious?, No (%) *</td><td align="center" /></tr><tr><td align="left">At Work</td><td align="center">21 (40.4%)</td></tr><tr><td align="left">At School</td><td align="center">6 (11.5%)</td></tr><tr><td align="left">At Home</td><td align="center">24 (46.1%)</td></tr><tr><td align="left">In Public</td><td align="center">23 (44.2%)</td></tr><tr><td align="left">I am not Anxious</td><td align="center">14 (26.9%)</td></tr></tbody></table> </ephtml> </p> <p>2 <emph>Note:</emph> * indicates more than one response may have been selected by the participant.</p> <p>For coping mechanisms, our team identified four categories of response (social, creative, thinking and physical). There appeared to be preferences among coping mechanisms based on occupation and sex, so further analysis was conducted on these categorisations (Table 3). Those with employment were more likely to report using social coping mechanisms (Figure 1). There were no other differences by employment status or gender.</p> <p>3 TABLE Coping mechanisms among adults with Down syndrome by employment and sex.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">Participants who work</th><th align="center">Participants who do not work</th><th align="center" /><th align="center" /><th align="center">Men</th><th align="center">Women</th><th align="center" /><th align="center" /></tr><tr><th align="left" /><th align="center">(<italic>n</italic> = 27)</th><th align="center">(<italic>n</italic> = 18)</th><th align="center" /><th align="center" /><th align="center">(<italic>n</italic> = 20)</th><th align="center">(<italic>n</italic> = 25)</th><th align="center" /><th align="center" /></tr><tr><th align="left">Mechanism, No (%)*</th><th align="center" /><th align="center" /><th align="center">Chi Square value</th><th align="center">Fisher's exact test <italic>p</italic></th><th align="center" /><th align="center" /><th align="center">Chi Square value</th><th align="center">Fisher's exact test <italic>p</italic></th></tr></thead><tbody valign="top"><tr><td align="left">Physical coping</td><td align="center">22 (81.5%)</td><td align="center">10 (55. 6%)</td><td align="center">3.5</td><td align="center">0.09</td><td align="center">15 (75%)</td><td align="center">17 (68%)</td><td align="center">0.3</td><td align="center">0.7</td></tr><tr><td align="left">Social coping</td><td align="center">24 (88.9%)</td><td align="center">9 (50%)</td><td align="center">8.4</td><td align="center">0.006</td><td align="center">15 (75%)</td><td align="center">18 (72%)</td><td align="center">0.05</td><td align="center">> 0.9</td></tr><tr><td align="left">Creative coping</td><td align="center">21 (77.8%)</td><td align="center">18 (100%)</td><td align="center">0.1</td><td align="center">> 0.9</td><td align="center">15 (75%)</td><td align="center">24 (96%)</td><td align="center">4.2</td><td align="center">0.07</td></tr><tr><td align="left">Thinking coping</td><td align="center">23 (85.2%)</td><td align="center">16 (88.9%)</td><td align="center">4.6</td><td align="center">0.07</td><td align="center">17 (85%)</td><td align="center">22 (88%)</td><td align="center">0.09</td><td align="center">> 0.9</td></tr></tbody></table> </ephtml> </p> <p>3 <emph>Note:</emph> * indicates more than one response may have been selected by participant.</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01jan25/jar13311-fig-0001.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar13311-fig-0001.jpg" title="1 Coping mechanisms by sex and job status. More than one response may have been selected by the participant." /> </p> <p></p> <p>We analysed two open‐ended questions with nearly 75% of survey participants responding (Table 4). These questions asked what they would tell friends, family and medical professionals about mental health needs for people with Down syndrome. A common theme that respondents wanted friends and family to understand centred on the need for social connections (e.g., 'social activities like dances'; 'people to talk to'; 'having a healthy relationship'; 'it is important to have friends'). Some asked for empathy and visibility about their mental health ('to be given help, not just looked at and assumed I am dumb and don't need help'; 'hugs and understanding'; 'mental health is not seen because of Down syndrome'). One survey respondent emphasised that they struggle with mental health concerns by emphasising that 'just because I have Down syndrome doesn't mean I don't get worried or feel stress'. Survey respondents also emphasised that medical professionals should work on understanding (e.g., 'find doctors that can understand us more'; 'l want to have someone listen'). They also emphasised the need to find medical support for their mental health (e.g., 'need more mental health providers'; 'counseling options immediately [...] options that are not all talking. So art therapy, movement therapy').</p> <p>4 TABLE Participant responses—what people with Down syndrome need for their mental health.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Theme</th><th align="center">Participant Information</th><th align="center">Quotes</th></tr></thead><tbody valign="top"><tr><td align="left">Responses directed to friends, family, and caregivers</td></tr><tr><td align="left">Social connection</td><td align="center">Woman, 24 years old</td><td align="center">'social activities like dances'</td></tr><tr><td align="center">Woman, 36 years old</td><td align="center">'people to talk to'</td></tr><tr><td align="center">Man, 24 years old</td><td align="center">'friends, group activities'</td></tr><tr><td align="left">Visibility</td><td align="center">Man, 23 years old</td><td align="center">'Just because I have Down syndrome doesn't mean I don't get worried or feel stress'</td></tr><tr><td align="center">Man, 25 years old</td><td align="center">'It is not seen because of DS'</td></tr><tr><td align="center">Woman, 27 years old</td><td align="center">'someone to notice and listen'</td></tr><tr><td align="left">Empathy</td><td align="center">Man, 41 years old</td><td align="center">'care'</td></tr><tr><td align="center">Woman, 31 years old</td><td align="center">'To be given help not just looked at and assumed I am dumb and don't need help'</td></tr><tr><td align="center">Woman, 25 years old</td><td align="center">'hugs and understanding'</td></tr><tr><td align="left">Responses directed to doctors and medical professionals</td></tr><tr><td align="left">Listening</td><td align="center">Woman, 39 years old</td><td align="center">'I want to have someone listen'</td></tr><tr><td align="center">Woman, 38 years old</td><td align="center">'Understand me, don't judge me'</td></tr><tr><td align="center">Man, 35 years old</td><td align="center">'For them to understand that it is real'</td></tr><tr><td align="left">Finding mental health support</td><td align="center">Woman, 27 years old</td><td align="center">'Need more mental health providers'</td></tr><tr><td align="center">Woman, 31 years old</td><td align="center">'Counselling options immediately not be put on a waiting list and options that are not all talking because some people with down syndrome have speech issues. So art therapy, movement therapy etc'.</td></tr><tr><td align="center">Man, 43 years old</td><td align="center">'The best way is to find Therapy'</td></tr></tbody></table> </ephtml> </p> <hd id="AN0183982466-9">Discussion</hd> <p>Few studies utilise surveys specifically designed for people with Down syndrome, particularly about mental health. Mental health, namely stress and anxiety, is of prevalent and of high importance to adults with Down syndrome.</p> <hd id="AN0183982466-10">Occurrence of Stress and Anxiety</hd> <p>We found that more than two thirds of survey respondents experienced stress, while over half reported feelings of anxiety. Our findings align with other research documenting the prevalence of mental health conditions among people with Down syndrome (Foley et al. [<reflink idref="bib14" id="ref32">14</reflink>]; Mantry et al. [<reflink idref="bib26" id="ref33">26</reflink>]; Rivelli et al. [<reflink idref="bib31" id="ref34">31</reflink>]), as stress and anxiety may precipitate mental health concerns (Centers for Disease Control and Prevention [<reflink idref="bib8" id="ref35">8</reflink>]; Yang et al. [<reflink idref="bib42" id="ref36">42</reflink>]). Stress is a key contributor to depression (Walker et al. [<reflink idref="bib39" id="ref37">39</reflink>]; Yang et al. [<reflink idref="bib42" id="ref38">42</reflink>]) and understanding the interplay of stress and anxiety will help better understand mental illness and treatment options for individuals with Down syndrome. If mental health symptoms are unaddressed, they may lead to further psychological distress or health concerns. Excess stress and anxiety may worsen physical and mental health, particularly if coping strategies are not adequate (Bystritsky and Kronemyer [<reflink idref="bib5" id="ref39">5</reflink>]). Nonetheless, we found that adults with Down syndrome employed a variety of coping mechanisms to care for their mental health.</p> <hd id="AN0183982466-11">Coping Strategies</hd> <p>When asked about preferred activities for managing stress or anxiety, most participants identified activities similarly across four broad categories: physical, creative, social and thinking. People who had jobs preferred social coping activities such as talking to a friend or family member. Employment has a positive impact on quality of life for adults with Down syndrome by providing stability and interpersonal connection (Haddad et al. [<reflink idref="bib19" id="ref40">19</reflink>]). This observation aligns with our findings suggesting that individuals with jobs tend to gravitate toward social activities as coping mechanisms for dealing with stress and anxiety.</p> <p>We found little research on the self‐reported coping strategies of adults with Down syndrome, though literature exists about caregiver and sibling anxiety, coping and resilience (Hodapp [<reflink idref="bib20" id="ref41">20</reflink>]; Lee, Neil, and Friesen [<reflink idref="bib24" id="ref42">24</reflink>]; Sideropoulos et al. [<reflink idref="bib35" id="ref43">35</reflink>]; Wolfe et al. [<reflink idref="bib40" id="ref44">40</reflink>]). Research on caregivers of people with Down syndrome highlights the multifaceted nature of caregiver psychological health and the interconnectedness between caregiver stress and anxiety and similar manifestations in their children (Hodapp et al. [<reflink idref="bib21" id="ref45">21</reflink>]). While there is not literature about the influence of caregiver anxiety on the anxiety of the person with Down syndrome they care for, studies in the broader context of parenting and child development have examined the impact of parental mental health (Centers for Disease Control and Prevention [<reflink idref="bib7" id="ref46">7</reflink>]) and home environmental factors (Basu and Banerjee [<reflink idref="bib3" id="ref47">3</reflink>]) on the mental health of children.</p> <hd id="AN0183982466-12">Findings in the Context of the 'Down Syndrome Advantage'</hd> <p>The 'Down syndrome advantage' theory posits that children with Down syndrome are easier to raise compared with children with other intellectual and developmental disabilities with mothers and families experiencing lower rates of psychological stress (Esbensen and Seltzer [<reflink idref="bib13" id="ref48">13</reflink>]) although other studies question this phenomenon (Corrice and Masters Glidden [<reflink idref="bib11" id="ref49">11</reflink>]; Jess et al. [<reflink idref="bib22" id="ref50">22</reflink>]). This advantage along with cheerful personality stereotypes (Gilmore, Campbell, and Cuskelly [<reflink idref="bib18" id="ref51">18</reflink>]) sets up the assumption that people with Down syndrome do not experience mental health challenges and limits the exploration and understanding the psychological needs of the Down syndrome community. It is clear from our results and prior research (Capone et al. [<reflink idref="bib6" id="ref52">6</reflink>]; Rivelli et al. [<reflink idref="bib31" id="ref53">31</reflink>]) that the mental health of adults with Down syndrome merits further research and treatment supports.</p> <p>The concept of resilience is significant in research about lived experiences of people with Down syndrome. Resilience refers to the ability to adapt to challenging life events or withstand adversity, experiences that people with Down syndrome encounter regularly in a world that was not built for them. People with Down syndrome face adverse situations, such as lack of employment opportunity (Nord, Grossi, and Andresen [<reflink idref="bib30" id="ref54">30</reflink>]) or health co‐morbidities (Chicoine et al. [<reflink idref="bib10" id="ref55">10</reflink>]). However, people with Down syndrome embody resilience and enjoy a positive quality of life in many ways. Further support for this comes from a study of self‐perceptions where researchers found that people with Down syndrome reported positive self‐esteem, happiness and satisfaction with their lives and family (Skotko, Levine, and Goldstein [<reflink idref="bib36" id="ref56">36</reflink>]). Fostering resilience among people with Down syndrome can be facilitated through inclusion, both within the research process and active participation. Such inclusion promotes their engagement in society and fosters connections to enhance quality of life.</p> <hd id="AN0183982466-13">Listening to People With Down Syndrome</hd> <p>Our survey highlights the importance of asking people with Down syndrome about their experiences and helps gain insight into their world. Research shows that self‐perceived health serves as a reliable measure of health status in general populations (Wu et al. [<reflink idref="bib41" id="ref57">41</reflink>]) and for people with intellectual and developmental disability (Fujiura [<reflink idref="bib16" id="ref58">16</reflink>]). This insight is crucial for identifying and addressing critical issues that impact their lives. The centrality that personal perceptions play in mental health research is clearly important and aids in the process of tailoring supports and treatments more efficiently. Inclusion and recognition in research extend beyond scientific advancement as a testament to social and disability justice issues, echoing the disability rights slogan of 'nothing about us without us'.</p> <p>Through the implementation of a co‐research methodology, our team members with lived experience and an understanding of the Down syndrome community strengthened our approach. Co‐researchers reviewed survey results through participatory data analysis, emphasising the importance coping strategies had in their own experience. Through sorting activities, they categorised these strategies into four distinct groups: social, creative, thinking and physical activities. Most co‐researchers on our team are employed, which stoked curiosity about coping at work. Their insights improved the accessibility and understanding of our survey questions, leading to better data quality. Co‐research as a form of participatory action research is not a new concept, and our process of forming a collaborative research team of people with and without Down syndrome adds to the literature regarding the invaluable role of people with intellectual and developmental disabilities within research teams. Our research documents the significant contributions of adults with Down syndrome to investigate health issues of concern to the Down syndrome community through the research process. Through collaboration in research development, implementation and dissemination, the team explored the mental health of adults with Down syndrome via an online survey.</p> <hd id="AN0183982466-14">Limitations</hd> <p>Our study had several limitations. Our sample size was relatively small which may limit our statistical power and generalizability. The survey's online format could have introduced self‐selection and response bias, as participants with awareness or interest in mental health issues may have been more inclined to respond (Rubenstein and Furnier [<reflink idref="bib32" id="ref59">32</reflink>]). We were not able to find a validated survey about mental health concerns for people with Down syndrome that could be used in this context (self‐completed online survey) and therefore results may not be comparable to results from clinical settings We asked respondents the help they received in completing the survey, but it is still possible that some caregivers either answered for or influenced the respondents' answers.</p> <hd id="AN0183982466-15">Conclusion</hd> <p>Our team of researchers with and without Down syndrome sought to address the mental health concerns within the Down syndrome community by leveraging lived experience to steer a project focused on stress, anxiety and coping mechanisms. Our findings indicate that adults with Down syndrome do exhibit stress and anxiety, which challenges unhelpful stereotypes and misconceptions about their psychological well‐being. To better support people with Down syndrome and their families, recognition of mental health issues along with access to tailored mental health interventions are imperative.</p> <hd id="AN0183982466-16">Author Contributions</hd> <p>All authors made substantial contributions to the study design and interpretation of data. A.S., R.G. and E.R. conceptualised and designed the study with input from S.C., A.E., B.G., E.R., K.S., A.S. and C.V. R.G., L.Q. and E.R. conducted quantitative data analysis and A.S., R.G., S.C., A.E., B.G., E.R., K.S., A.S. and C.V. collaborated on qualitative analysis. S.C., A.E., B.G., E.R., K.S., A.S. and C.V. contributed to interpretation of all data and figures. A.S., R.G., K.K.‐F., E.B., P.S.K. and E.R. contributed to manuscript drafts. All authors reviewed and approved the final version.</p> <hd id="AN0183982466-17">Ethics Statement</hd> <p>All study protocols and procedures were approved by the Institutional Review Board at the Boston University Medical Campus (IRB number: H‐43472).</p> <hd id="AN0183982466-18">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0183982466-19">Data Availability Statement</hd> <p>The data that support the findings of this study are available from the corresponding author upon reasonable request.</p> <p>GRAPH: Data S1. Supporting Information.</p> <p>GRAPH: Data S2. Supporting Information.</p> <ref id="AN0183982466-20"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref25" type="bt">1</bibl> <bibtext> Funding: This work was funded by the National Institute on Aging R01AG073179.</bibtext> </blist> </ref> <ref id="AN0183982466-21"> <title> References </title> <blist> <bibtext> Advocate Medical Group. 2017. "Tips for Dealing With Stress. 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Current Neuropharmacology 13 : 494 – 504.</bibtext> </blist> </ref> <aug> <p>By Ashley Scott; Ryan Gould; Liam Quidore; Keryden Koeut‐Futch; Emily Bock; Prisha Sujin Kumar; Staci Christensen; Augusta Edouard; Benjamin Golden; Eden Rapp; Kaethe Sigelko; Alexis Sokoloff; Caley Versfelt and Eric Rubenstein</p> <p>Reported by Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib10" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib31" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib26" firstref="ref3"></nolink> <nolink nlid="nl4" bibid="bib28" firstref="ref4"></nolink> <nolink nlid="nl5" bibid="bib29" firstref="ref5"></nolink> <nolink nlid="nl6" bibid="bib38" firstref="ref8"></nolink> <nolink nlid="nl7" bibid="bib35" firstref="ref9"></nolink> <nolink nlid="nl8" bibid="bib12" firstref="ref10"></nolink> <nolink nlid="nl9" bibid="bib14" firstref="ref11"></nolink> <nolink nlid="nl10" bibid="bib25" firstref="ref13"></nolink> <nolink nlid="nl11" bibid="bib24" firstref="ref15"></nolink> <nolink nlid="nl12" bibid="bib33" firstref="ref16"></nolink> <nolink nlid="nl13" bibid="bib17" firstref="ref17"></nolink> <nolink nlid="nl14" bibid="bib27" firstref="ref19"></nolink> <nolink nlid="nl15" bibid="bib37" firstref="ref20"></nolink> <nolink nlid="nl16" bibid="bib23" firstref="ref21"></nolink> <nolink nlid="nl17" bibid="bib34" firstref="ref22"></nolink> <nolink nlid="nl18" bibid="bib15" firstref="ref24"></nolink> <nolink nlid="nl19" bibid="bib42" firstref="ref36"></nolink> <nolink nlid="nl20" bibid="bib39" firstref="ref37"></nolink> <nolink nlid="nl21" bibid="bib19" firstref="ref40"></nolink> <nolink nlid="nl22" bibid="bib20" firstref="ref41"></nolink> <nolink nlid="nl23" bibid="bib40" firstref="ref44"></nolink> <nolink nlid="nl24" bibid="bib21" firstref="ref45"></nolink> <nolink nlid="nl25" bibid="bib13" firstref="ref48"></nolink> <nolink nlid="nl26" bibid="bib11" firstref="ref49"></nolink> <nolink nlid="nl27" bibid="bib22" firstref="ref50"></nolink> <nolink nlid="nl28" bibid="bib18" firstref="ref51"></nolink> <nolink nlid="nl29" bibid="bib30" firstref="ref54"></nolink> <nolink nlid="nl30" bibid="bib36" firstref="ref56"></nolink> <nolink nlid="nl31" bibid="bib41" firstref="ref57"></nolink> <nolink nlid="nl32" bibid="bib16" firstref="ref58"></nolink> <nolink nlid="nl33" bibid="bib32" firstref="ref59"></nolink>
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Stress, Anxiety and Coping in Adults with Down Syndrome: An Exploratory Co-Research Study
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Ashley+Scott%22">Ashley Scott</searchLink><br /><searchLink fieldCode="AR" term="%22Ryan+Gould%22">Ryan Gould</searchLink><br /><searchLink fieldCode="AR" term="%22Liam+Quidore%22">Liam Quidore</searchLink><br /><searchLink fieldCode="AR" term="%22Keryden+Koeut-Futch%22">Keryden Koeut-Futch</searchLink><br /><searchLink fieldCode="AR" term="%22Emily+Bock%22">Emily Bock</searchLink><br /><searchLink fieldCode="AR" term="%22Prisha+Sujin+Kumar%22">Prisha Sujin Kumar</searchLink><br /><searchLink fieldCode="AR" term="%22Staci+Christensen%22">Staci Christensen</searchLink><br /><searchLink fieldCode="AR" term="%22Augusta+Edouard%22">Augusta Edouard</searchLink><br /><searchLink fieldCode="AR" term="%22Benjamin+Golden%22">Benjamin Golden</searchLink><br /><searchLink fieldCode="AR" term="%22Eden+Rapp%22">Eden Rapp</searchLink><br /><searchLink fieldCode="AR" term="%22Kaethe+Sigelko%22">Kaethe Sigelko</searchLink><br /><searchLink fieldCode="AR" term="%22Alexis+Sokoloff%22">Alexis Sokoloff</searchLink><br /><searchLink fieldCode="AR" term="%22Caley+Versfelt%22">Caley Versfelt</searchLink><br /><searchLink fieldCode="AR" term="%22Eric+Rubenstein%22">Eric Rubenstein</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-9146-4497">0000-0002-9146-4497</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2025 38(1).
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 9
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: SourceSuprt
  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: National Institute on Aging (NIA) (DHHS/NIH)
– Name: NumberContract
  Label: Contract Number
  Group: NumCntrct
  Data: R01AG073179
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Management%22">Stress Management</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink><br /><searchLink fieldCode="DE" term="%22Employment+Level%22">Employment Level</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.13311
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co-research model to explore anxiety, stress, and coping in adults with Down syndrome. Methods: Our group of researchers and adults with Down syndrome conducted an online survey on mental health for adults with Down syndrome. We analysed quantitative data and thematically grouped coping mechanisms. Results: Sixty adults with Down syndrome completed the survey, mean age was 30 years, and 55% of respondents had some employment. Approximately 80% of respondents reported experiencing stress and 75% reported experiencing anxiety. Employed respondents were more likely to use social coping mechanisms. Conclusion: Soliciting responses from adults with Down syndrome about their mental health can provide valuable insights. Mental health is a concern for people with Down syndrome that should be addressed.
– Name: AbstractInfo
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  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1461056
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1461056
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.13311
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 9
    Subjects:
      – SubjectFull: Down Syndrome
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Stress Variables
        Type: general
      – SubjectFull: Anxiety
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      – SubjectFull: Stress Management
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      – SubjectFull: Coping
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      – SubjectFull: Employment Level
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      – SubjectFull: Mental Health
        Type: general
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      – TitleFull: Stress, Anxiety and Coping in Adults with Down Syndrome: An Exploratory Co-Research Study
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