Exploring sibling relationships of adolescents with disabilities during health care transition

Funding Details
Canadian Institutes of Health Research
  • Grant type: Fellowship: Patient-Oriented Research Awards - Transition to Leadership Stream - Phase 1
  • Year: 2020/21
  • Total Funding: $34,167
Keywords
Principle Investigator(s)
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No researchers found.

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Project Summary

As children with disabilities grow up and become adults, they will move from their pediatric to adult health care providers. During this transition in health care, they need to learn how to make their own decisions about their health. This is not easy and they often need help from their family members. Siblings are part of the family who can support their brother or sister with a disability during transition. We developed the Sibling Youth Advisory Council (SibYAC), comprised of five young adults who have a brother or sister with a disability. We are collaborating with the SibYAC who identified this research project as important to raising awareness about siblings' roles. This research project includes three studies: 1) A review of information about current sibling programs 2) An interview with twenty young adults who have a brother or sister with a disability who can share how they have helped their brother or sister prepare for health care transition 3) The development and initial testing of a resource to help siblings better support their brother or sister prepare for health care transition Findings from this research can help young people with disabilities going through transition by promoting their siblings' role. Results will be shared with families and health care providers by: a) creating a summary of information, such as pamphlets, videos, or podcasts, to be posted on websites; b) publishing research papers; and c) presenting at health conferences and workshops. This information can encourage families and health care providers to use different ways to actively include siblings in health care transition. Successful transition to adult health care is important for young people with disabilities to live healthy and happy lives, be involved in the community, and have a good quality of life.

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