Multiregional study documents the experiences of siblings of people with intellectual disabilities

kids walk together in a corn field

Having a sibling with an intellectual disability influences young people in a range of ways. The relationships between siblings can have many positive aspects and more challenging parts such as encountering stigma or discrimination against those with an intellectual disability. In past research, the perceptions of Western parents of an intellectually disabled child were studied most often. This leaves much more to be revealed about the perspectives of siblings and those living in different regions of the globe. 

New research completed by UMass Amherst faculty member Ashley Woodman, and members of Special Olympics International, and George Washington University explored the benefits, challenges, and support needs of siblings of people with intellectual disabilities across Latin America, Africa, and Asia-Pacific (the Global South).

Twenty-two child and young adult siblings of Special Olympics athletes participated in focus groups during Special Olympics Regional Sibling and Family Workshops. The purpose of these workshops was to connect siblings of people with intellectual disabilities, provide them with supportive resources, and facilitate leadership development. Analysis of group discussions revealed both positive and more challenging themes.

Positive themes included valuing siblings with intellectual disabilities, having close relationships, and experiencing personal growth because of their sibling experience. Also, many focus groups expressed pride in their sibling and highlighted their positive qualities.

Challenging themes involved impacts to a sibling’s sense of self (i.e., dealing with their own stigma towards disability), a heightened sense of responsibility, and noting differences from their peers. Challenges within the family setting involved stigma towards disability, communication problems, and encountering behavioral issues. Focus groups also spoke of problems in the broader community such as societal stigma toward intellectual disability and a lack of knowledge of this condition.

Woodman remarks, “A key finding of this study is the pervasive impact of stigma at the community, family, and individual level. What is not at all surprising is the deep bond these siblings reported. The majority of challenges the siblings reported related to a lack of community resources and supports as well as misunderstandings about disability rather than interpersonal challenges with their sibling. These findings speak to the importance of programs, like Special Olympics, that seek to reduce stigma and celebrate people with intellectual disability and their families.”

Study results show a need for supports that address the entire family. For example, keeping open communication and involving all family members in group discussions would ensure all voices are heard. Other supports like providing a safe space to explore emotions, sharing information about intellectual disabilities, and setting aside time for fun family activities would also be beneficial. 

Specific assistance for siblings of people with intellectual disabilities could incorporate support groups and opportunities to connect with others like them. Engaging in community-level programs that aim to reduce stigma and discrimination against intellectual disability would also aid siblings and potentially allow them to grow as advocates for inclusion. Overall, more quality services for individuals with intellectual disabilities and the families that support them are necessary in the Global South.