Assistant professor of Practice, Psychology and Human Development and VKC member Jessika Boles, Ph.D., and colleagues recently published results of a research study detailing the complex lived experiences of adult siblings of individuals with intellectual and developmental disabilities (IDD). “‘A positive experience over a negative one’: Stress, coping, and the experiences of adult siblings of intellectually and/or developmentally disabled individuals” can be found in the most recent publication of the journal Research in Developmental Disabilities.
All the authors of the article – Miles Abney, Rhea Patney, and faculty facilitator Jessika Boles – are adults who grew up with a sibling with IDD. Abney, now a clinical psychology doctoral student at the University of Alabama, participated in this project for her honors thesis, and Patney recently defended her honors thesis on a different topic and is headed to graduate school in healthcare administration. Boles runs the Children’s Healthcare across Illness, Loss, and Legacy Lab (CHILL Lab), which focuses on enhancing patient- and family-centered care, and she serves as faculty director of the Vanderbilt University chapter of SibShops, which serves the greater Nashville area. SibShops is a regular gathering of young siblings of individuals with disabilities. The program allows the kids to have fun, have trusted adults to speak to, and just be themselves with peers in similar familial situations.
“At the time, I was already certified as a SibShops facilitator and coordinating our Vanderbilt University SibShops chapter, so when my undergraduate honors student, Miles Abney, wanted to focus her research on the experiences of siblings, it was a perfect fit!” said Boles. “Miles and I both could relate to the experience of being a sibling to someone with IDD and enjoyed reflecting on how we felt it had impacted on our development, course of study, career goals, and even thoughts and fears about the future. This study gave us a chance to see if other siblings – now in adulthood – felt or saw the same kinds of effects, and how as adult people they may be utilizing coping resources and skills they learned about or honed during their childhood as a sibling.
“It was really impactful for all of us authors, Rhea included, to see how our own experiences as siblings aligned with and differed from what we heard from our participants,” Boles added.
Data was collected through an online survey component and then an optional Zoom interview. Research facilitators studied the responses in an explanatory sequential design, meaning that they used the two sources of information to examine patterns across the participants. Research participants were recruited through clinical research listservs, social media promotion, and dissemination on the Organization for Autism Research website. Sibling participants ranged in age from 19 to 50 and above, though most were between 18 and 29 years old at the time of participating. Participants reported their siblings with IDD ranged in ages from 10 to over 40, though most were between 10 and 18.
Overall, the study revealed the benefits and challenges of the sibling experience. Participants talked about how their sibling with a disability enriched their life, strengthened their sense of empathy, and gave them a better and wider perspective on life. At the same time, they also talked about feeling worried about their sibling, confusion about their sibling’s diagnosis, and fears about how they will care for their sibling in the future.
“One thing that frequently came up, especially among our female sibling participants, were concerns about planning for their sibling’s future and the role that they expected to play in that time and transition,” said Boles. “Even our participants who were college-aged were already acutely aware of, and actively thinking about, who and how their sibling would be cared for both as they aged out of schools and social support organizations and as parents/caregivers grew older and more limited in their capacity.
“The three of us as authors, all female and older siblings of a person with IDD, could deeply relate to that thought process as something we had been thinking about for most of our teenage and adult lives,” she continued. “I think this finding is important because it shows how early, how much, and how often siblings are thinking about their brother or sister’s future, the limitations of the supports out there, and thus we need to be providing more and earlier support.”
While collecting data, Boles, Abney, and Patney were surprised to see that many of the sibling participants felt confident in the availability of coping resources and the effectiveness of their coping skills, both in terms of managing their feelings related to their sibling as well as the rest of their life stressors.
“As sibling authors, we knew how stressful and overwhelming it can be at times caring for a sibling with IDD and coping with the impact that has on your family system and activities,” said Boles. “However, our participants felt like their siblings enriched their lives – and we would agree! – both because of their wonderful personhood and presence, but also because of the skills and growth they developed in themselves along the way by having a sibling with IDD.”
Most participants said they cope with this stress using emotional tools and skills, like getting help from others, accepting their sibling, and sometimes blaming themselves. Therefore, being a sibling of a person with intellectual and/or developmental disabilities can be both rewarding and difficult at the same time – but siblings wouldn’t change their experience even if they could.
When asked about optimal outcomes after sharing the research, Boles stated, “I hope readers will see that having a sibling with IDD is a complicated experience – but one that many people come to really value and, over time, cultivate their skills and interests to align with that experience. It can be really difficult sometimes, but at the end of the day, a sibling with IDD enriches people’s lives in many ways, too. What I hope policymakers and service providers will see is the need for more – and earlier – recognition of the sibling experience, and that it will generate efforts to fill this gap during childhood AND adulthood too.”
SibShops meetings taking place at Vanderbilt
SibShops offer support for brothers and sisters of kids with special needs, including intellectual and developmental disabilities, special medical needs, or mental health concerns. These gatherings offer a safe space for kids to come and be kids, with peer support, educational programming, and fun activities like cooking, crafts, and games. For more information on attending an upcoming SibShops gathering, email VanderbiltSibShops@vanderbilt.edu.
Abney, M. C., Patney, R., & Boles, J. C. (2026). “A positive experience over a negative one”: Stress, coping, and the experiences of adult siblings of intellectually and/or developmentally disabled individuals. Research in Developmental Disabilities, 171, 105272.
Top photo by Getty Images/iStockphoto
