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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 the Canadian Centre for Caregiving Excellence (CCCE) and Siblings Canada, a research team from Western University will complete a project to better understand this period of change and how it impacts the mutual care relationships between siblings. The purpose of this project is to learn about the experiences of the siblings and how they imagine their futures together by highlighting recurring themes and shared values.

The project will include:

  • 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
  • Delivering an online support group for siblings

*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.