Publications and Presentations

January 2021 

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

Poster displayed at the Canadian Transitions Pop-Up Event in January 2021 

Linda NguyenMarjolijn KetelaarBriano Di Rezze, Susan Jack, and Jan Willem Gorter in partnership with the Sibling Youth Advisory Council.

May 2020

Sibling Engagement in Research: An Illustrative Example of a Sibling-Researcher Partnership To Design a Study

  • Co-presentation of our SibYAC partnership to design the BEST SIBS Study at the CHILD-BRIGHT Virtual Symposium in May 2020
  • Linda Nguyen, Hanae Davis, Samantha Bellefeuille, Marjolijn Ketelaar, Briano Di Rezze, Susan Jack, and Jan Willem Gorter

October 2020

Learning from Youth and Young Adults: Engagement Strategies for Patient-Oriented Research Projects, Committees, and Councils

  • Webinar of our collaboration with CHILD-BRIGHT’S National Youth Advisory Panel (NYAP)
  • Gillian Backlin, Samantha Bellefeuille, Hanae Davis, Corinne Lalonde, Linda Nguyen, and Julia Tesolin

November 2020 - January 2021

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

  • Poster co-presentation at Kids Brain Health Network Conference in November 2020 and poster displayed at the Canadian Transitions Pop-Up Event in January 2021
  • Linda Nguyen, Hanae Davis, Samantha Bellefeuille 

Video link

April 2021

The Art of Sibling Science

  • Webinar at Luke’s Legacy Family Research Rounds to share about the multi-faceted roles of siblings and how they are captured in different fields, including at home, careers, mental health, and childhood disability research.
  • Linda Nguyen, Hanae Davis, Jessica Havens, and Samantha Bellefeuille


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 Sept 3(1); doi: 10.1515/jtm-2021-0004.

Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review.

Siblings share a lifelong bond in their relationship. When a brother or sister has a neurodisability, a sibling may choose to provide support. This review aims to summarize the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability. The researchers describe how they will carry out the scoping review in this protocol paper. In partnership with the Sibling Youth Advisory Council, they plan to share the findings with stakeholders such as healthcare providers, researchers, and patient and family advocacy groups. Authors: Nguyen LBootsma JDi Rezze B, Jack S, Ketelaar MGorter JW. BMJ Open. 2021 Jul 7;11(7):e053184. doi: 10.1136/bmjopen-2021-053184.