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 including anthropologists Pamela Block and Dima Kassem and Siblings Canada founder co-founder Helen Ries conducted a study 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.

Key takeaways: 

• Sibling caregiving often begins during major life transitions, when siblings are suddenly expected to take on primary care responsibilities with little guidance or support. 

• There are significant gaps in Canada’s disability support systems, forcing sibling caregivers to navigate long waitlists, limited housing options, fragmented services, and inadequate financial and mental health supports. 

• Siblings are routinely pushed into caregiving and advocacy roles, taking on housing, care coordination, and daily living support without meaningful compensation or relief. 

• To create livable futures together, siblings often take “extraordinary measures,” including moving, cohabitating, changing or leaving paid work, and reshaping their lives in ways driven by necessity rather than choice. 

• The research calls for a shift from caregiving being a family responsibility to a public one, emphasizing disabled people’s right to choice and autonomy and the need for stronger societal and government 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

Op-Ed: The Toronto Star — As disabled people increasingly outlive their parents, many siblings struggle to take on new care responsibilities 

*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.