Understanding the evolving care relationships between siblings

When a sibling of a disabled* or autistic person becomes a primary caregiver, the shift can be overwhelming. In Canada, there are few resources available to support this transition.

With support from CCCE and Siblings Canada, a research team from Western University has completed a project to better understand this period of change and how it impacts the mutual care relationships between siblings. The purpose of this project was to learn about the experiences of siblings and how they imagine their futures together by highlighting recurring themes and shared values.

The project included:

• Conducting a series of interviews and video testimonials with adults and their disabled siblings
• Creating and collecting photographs documenting their lives together
• Developing a policy brief with recommendations for better support for sibling care relationships

Learn more about the project by exploring the links below:

Research article: Extraordinary measures of sibling worldmaking

Webcast: The diverse and dynamic nature of sibling caregiving over time

Podcast: Professor Pamela Block on Canada vs US support and Siblings

Dr. Pamela Block can be reached at [email protected].

*The neurodivergent (NDD) community in North America prefers to use “identity-first” language – that is, to lead with a description, e.g., “autistic person.” This approach understands neurodivergence as an inherent part of an individual’s identity. To respect this preference, we have made the choice at CCCE to use identity-first language in our work related to neurodiversity. While the NDD community has adopted “identity-first” language, it is important to note that not all disability communities have done the same.