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

• Main Authors: Nguyen Linda, Jack Susan M., Di Rezze Briano, Ketelaar Marjolijn, Gorter Jan Willem
• Format: Article
• Language: English
• Published: De Gruyter 2021-09-01
• Series: Journal of Transition Medicine
• Subjects: disability; health care transition; qualitative study; sibling
• Online Access: https://doi.org/10.1515/jtm-2021-0004

Children and youth with neurodisabilities may experience different challenges during their transition to adulthood, such as pursuing postsecondary education, finding employment, and navigating a new adult health care system. Families, including siblings, have an important role in the process for when youth with neurodisabilities are transitioning to adulthood. Siblings are in a unique position, where they can have different roles such as a friend, mentor, or caregiver. Siblings can offer various supports to their brother or sister with a neurodisability, but they require knowledge and skills for these different supporting roles. Currently, there are limited programs available for siblings to learn how to support their brother or sister with a neurodisability during transition. A first step to develop these sibling support programs is to understand the experiences of siblings of youth with a neurodisability. The purpose of this report is to describe a protocol of a qualitative case study aimed at examining the experiences of siblings including their roles and responsibilities to their brother or sister with a neurodisability during health care transition.