Progress to date

In July 2021, all interviews with sibling participants have been completed! Thank you to everyone who provided support with recruitment. We are continuing to partner with the SibYAC to analyze the data and plan to share the study results in 2022.

In 2021, our work from this study have been shared in the following ways:

Growing Together: The Process and Initial Outcomes of Partnering with Siblings in a Doctoral Patient-Oriented Research Study on Health Care Transition

The BEST SIBS Study: A Qualitative Case Study to Understand the Experiences of Siblings of Youth with a Brain-Based Disability During Health Care Transition

Protocol of the BEST SIBS Study: a qualitative case study to investigate the roles and responsibilities of siblings of youth with a neurodisability during health care transition.

Children and youth with neurodisabilities may experience different challenges during their transition to adulthood, such as navigating a new adult health care system. They may refer to their families, including their siblings, for support. This paper describes how the researchers are conducting a qualitative case study to interview siblings of youth with a neurodisability who are transitioning to adulthood, in partnership with the Sibling Youth Advisory Council. An understanding of siblings’ experiences in certain roles can help to inform the development of a resource to support siblings during health care transition. Authors: Nguyen L, Jack SM, Di Rezze BKetelaar MGorter JW. J. Transit. Med. 2021(1); doi: 10.1515/jtm-2021-0004.

We gratefully acknowledge funding from the Canadian Institutes of Health Research (CIHR) Fellowship: Patient-Oriented Research Award – Transition to Leadership Stream and the Graduate Student Fellowship in Patient-Oriented Research through the CHILD-BRIGHT Network to support our partnership with the Sibling Youth Advisory Council and this study.