Adult siblings of people with disability: exploring the complex system of relationships that contribute to positive life span outcomes

Mrs Wendy Simpson1

1Edith Cowan University, Joondalup, Australia

People with intellectual disability (ID) represent the largest cohort of people with disability accessing services in WA, and as many are now outliving their parents, other supportive relationships are required. The purpose of this mixed methods study is to gain a greater understanding of the experiences and factors that influence the relationships between siblings when one has ID.

The target population was adults who had grown up with a sibling with ID and who had lived in Perth, WA. Phase 1 was an online survey with 77 respondents. In phase 2, 20 interviews were conducted with participants from phase 1.

More than one third of the survey participants stated that growing up with a sibling with ID was a positive experience, though over 40% felt they did not fully understand their sibling’s disability while growing up. The survey results also revealed that the majority of participants expected that they would be providing care for their sibling with ID in the future, and more than half felt a sense of responsibility or lack of other options was the reason for this.

The study has significance as it will add to the existing literature that has explored adult sibling relationships when one has ID, seeking to understand the experiences of growing up with a sibling with ID and the influences of those experiences on relationships. The implications of the study are that the evidence will support early engagement and support for children who have a sibling with ID.


Wendy Simpson completed her Masters research in 2016, and is currently continuing to study the lived experiences of disability through her PhD research. Wendy works as a Research and Evaluation Coordinator in a not-for-profit community organisation in WA. Wendy’s background is within the aged care and the disability sector.

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