Health professionals’ and managers’ definitions of developmentally appropriate healthcare for young people: conceptual dimensions and embedded controversies

Abstract

Objectives-We aimed to (i) explore how health professionals and managers who work with young people seek to define developmentally appropriate healthcare (DAH), (ii) identify the range of conceptual dimensions present in their definitions and (iii) explore the controversies embedded in their characterisations of DAH.Methods-A qualitative multisite ethnographic study was conducted across three hospitals in England. We undertook face-to-face semi-structured interviews with health professionals and managers; and non-participant observation in clinics, wards and meetings. Anonymised field notes and interview transcripts were analysed using thematic analysis. The theme 'conceptualisations of DAH' was then further analysed, and the resulting themes categorised to form conceptual dimensions. Contributors TR, JEM, JRP and DR designed the original study. VW and AF carried out data collection and data analysis under the supervision of TR, JEM, DR and JRP. AF and TR led on the writing of this manuscript. All authors worked on drafts of the paper and approved the final version of this article. Results-We Competing interests None declared.Ethics approval The study protocol was approved by a National Health Service Research Ethics Committee and by the Research and Development departments of all the hospitals involved.Provenance and peer review Not commissioned; externally peer reviewed. Conclusions-This study illustrates the lack of a generalised definition of DAH for young people among UK health professionals and managers, and presents a set of five core dimensions that can inform future research to help define and evaluate DAH for young people. Europe PMC Funders Group

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“…This immediately shows that the provider is engaging with the patient as a distinct person, rather than using a "one size fits all" approach. Such personalized approaches are desirable in all health care but especially for adolescents in transition where "therapeutic" relationships, rapport, and trust are important as part of Developmentally Appropriate Healthcare [39,40]. Personalization should hopefully lead to more engagement and satisfaction with services, greater compliance with treatment and in turn, improved service use and health outcomes in adulthood.…”

Transition from children’s to adults’ services for young people using health or social care services (NICE Guideline NG43)

“…Evidence exists to support certain components, including transition planning and coordination, seeing YP independently from parents/caregivers and opportunities for YP to meet the relevant adult healthcare team before transfer 7. Current areas of research interest include indicators of success and transition readiness measures 8. Guidelines will need to be updated as evidence continues to emerge.…”

Worries and needs of adults and parents of adults with neurofibromatosis type 1

“…Additionally, the impaired socialization, low self‐esteem, and poor interpretation of social cues reported in children with NF1 (Lehtonen et al, 2013) may limit social participation in adulthood. Even when adults with NF1 receive care for the tumor growth phenotype, appropriate care for other NF1‐related morbidity is often not part of standardized care (Farre et al, 2016). …”

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