Grant: Project Grant

As adolescents with chronic health conditions enter adulthood, they need to be prepared to move from child-centered healthcare services to adult-focused healthcare services. A recent review of research about transition programs found that most of them focused on helping young people transfer to adult centers of care, but few offered support and information to prepare them and their families to address issues beyond the management of their health condition. This situation creates significant challenges for young people who may also benefit from information about managing other aspects of their lives including making healthy lifestyle choices, understanding their reproductive health, negotiating independence from parents, while experiencing the loss of services for children and the relationships they built in the child-centered system. To date, research on health care transition programs does not yet offer a full picture of how well different transition programs achieve goals of successful transition. Additionally, because research is limited, it is difficult to know what aspects of these programs benefit the global well-being of young persons. For these reasons, it is essential to support the development of services that seek to understand and meet the needs of patients during the transition period and to test their actual ability to promote the well-being of children in real-world contexts. We propose a specific kind of study (called "Participatory action research") aiming to engage all stakeholders (such as youth, parents and clinicians) in the development of a patient-oriented transition program. This study design implies that all these stakeholders will be considered as full partners in identifying priorities for developing and implementing a set of transition services. We hope that this original strategy will ensure that the knowledge generated will be useful for those who will use it and that it will help engage them in their institution.