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Objectives Advances in treatment have increased the life expectancy of many children with serious, complex, and rare diseases (Hagell et al., 2013). Consequently, more young people (YP) with ongoing health needs require transition from the familiar family-centred children's environment to the more individualistic adult services world. The ethical challenges this poses must be clarified and understood in order to develop appropriate resources to support successful complex transition. We aimed to identify and synthesize the published literature on ethical challenges related to healthcare transition. Methods We conducted a rapid literature review which followed the Interim Guidance from the Cochrane Rapid Reviews Methods Group (Garritty et al., 2021). The PubMed and Embase electronic databases were searched (inception – March 2023) using terms related to 'transition to adult care' and 'ethical challenges.' Empirical and non-empirical papers focusing on ethical aspects of YP, aged 10–25, transitioning from paediatric to adult healthcare were included. Articles solely focusing on transition related to mental health services or not in the English language were excluded. Citations were screened in Covidence using specific inclusion/exclusion criteria. Data were analysed using thematic and narrative synthesis (Thomas and Harden, 2008). Results After deduplication, 4386 references at title/abstract level and 181 full-text papers were dual-screened. Seventy-one papers were eligible for inclusion, representing 19 countries, 21 health conditions, and four stakeholder groups (table 1). A broad range of ethical challenges were synthesized into eight themes and subthemes (table 2). Conclusion The transition of YP from child into adult healthcare services raised ethical challenges for all involved, including YP, parents, clinicians and policymakers. Ethical challenges exist in the longstanding and changing relationships between clinicians, YP and parents throughout the transition process, often due to differences or gaps between paediatric and adult services. Due to a lack of preparation, abrupt and forced independence, and continuation of parents taking the lead, the promotion of YP's autonomy was inhibited, causing disparities within the transition process. Although the available literature represents different health conditions and varied stakeholders' perspectives, further work is required to explore challenges experienced during healthcare transition in developing countries and for patients who need palliative care, high-cost, complex, technology-dependent treatment, or treatment for rare diseases. These findings provide evidence to support the development of guidelines, e.g. incorporating equity indicators, training programmes and resources to progress towards a patient-centred, accessible, empowering transitional care. References Garritty C, Gartlehner G, Nussbaumer-Streit B, King VJ, Hamel C, Kamel C, Affengruber L, Stevens A. Cochrane rapid reviews methods group offers evidence-informed guidance to conduct rapid reviews. J Clin Epidemiol 2021;130:13–22. Hagell A, et al. Key data on adolescence 2013. London: Association for Young People's Health 2013. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008;8:45.
Vijayaratnam et al. (Tue,) studied this question.
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