Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities

Abstract

IntroductionAs adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues.Method and analysisWe will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers.DisseminationScoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.

In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

“…Evaluation is required to establish the most effective methods for information provision to young people with ADHD and their families, without adding to the workload of already overburdened health professionals. Future research needs to explore ethical issues faced by adult services in balancing patient confidentiality against a need for long term advocacy for young adults who are developmentally predisposed to struggle with managing their long term condition [25, 67]. These issues need urgent resolution so that the healthcare needs of young people with ADHD can continue to be jointly managed between young people, their parent/carers, and their clinicians into adulthood [68].…”

Contextualized Autonomy in Transitional Care for Youth With Neurologic Conditions: The Role of the Pediatric Neurologist

“…In our case example, a number of ethically problematic situations can be encountered. An ethically problematic situation is a "worrisome stake that needs discussion, attention and to be answered and surmounted via a concrete response taking into account specific agents and context involved" 13 in contrast to an ethical issue, which does not necessarily designate a lived experience in a given context. 13 The context within which autonomy is exercised makes a difference to how empowered or, alternately, how diminished autonomous actions can be.…”

“…An ethically problematic situation is a "worrisome stake that needs discussion, attention and to be answered and surmounted via a concrete response taking into account specific agents and context involved" 13 in contrast to an ethical issue, which does not necessarily designate a lived experience in a given context. 13 The context within which autonomy is exercised makes a difference to how empowered or, alternately, how diminished autonomous actions can be. If we consider Liz's context, we would explore factors that support or inhibit her ability to learn and develop skills that will enhance her ability to live independently while attending university, while remaining cognizant of any needed protections.…”

“…An important goal of most health care transition programs is the development of autonomy and independence of youth to promote transition readiness, to support youth to gradually manage their own health care needs and to advocate for themselves in the adult health care system. 13 Although autonomy may be a valued goal, the literature suggests that this goal may not be equally valued by all actors in the same way. 14,15 Indeed, functional and social complexity that might accompany conditions like cerebral palsy may influence the quality of youths' transitions, including their ability to become autonomous and independent in the traditional sense.…”

Transition from child-centred to adult-oriented healthcare systems for young people with neurodisability: a scoping review protocol

“…Evidence from these reviews may not be generalizable to neurodisability due to the range and complexity of these conditions and the greater need for service coordination 53 . A scoping review protocol by Bogassian and colleagues is the only one available looking specifically at transition and neurodisability 54 . However, their review focus considers the ethical issues encountered in transition programmes only.…”