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 pblock@uwo.ca.

*At CCCE, we recognize that language matters and that there is no single approach that reflects the preferences of all disability and neurodivergent communities. People and communities differ in how they choose to describe themselves, shaped by lived experience, culture, and context. While identity-first language is preferred by some communities, others strongly favour person-first language. We are committed to listening, learning, and evolving our language to reflect this diversity, centering the voices of people with lived experience, and using language that aims to respect dignity and self-identification and reduce stigma.