Facilitating transition of young people with long-term health conditions from children's to adults' healthcare services - implications of a 5-year research programme.

BACKGROUND: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control. METHODS: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme. IMPLICATIONS: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.It is important that healthcare provider organisations adopt an organisation-wide approach to implementation to ensure that good practice is adopted in children's and adults' services, not just adopted by enthusiasts in some specialties. This includes provision of 'developmentally appropriate healthcare' which recognises the changing biopsychosocial developmental needs of young people.Three features of transitional healthcare were associated with improved outcomes: appropriate parent involvement, promotion of young people's confidence in managing their health and meeting the adult team before transfer. These should be maintained or introduced as a priority.Child and adult healthcare providers should routinely explore with a young person how they approach transition and personalise their clinical approach thereafter.These implications are relevant for a range of stakeholders, including funders of transitional healthcare, organisations providing transitional healthcare and clinical practitioners.

Can we normalise developmentally appropriate health care for young people in UK hospital settings? An ethnographic study.

OBJECTIVE: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN: Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING: Two tertiary and one secondary care hospital in England. PARTICIPANTS: 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS: We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION: To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people.

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

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. RESULTS: We recruited 192 participants and conducted 65 interviews (41 with health professionals and 24 with managers) and approximately 1600 hours of non-participant observations (involving 103 health professionals and 72 managers). Despite the wide range of definitions provided by participants, five conceptual dimensions of DAH were identified: (i) biopsychosocial development and holistic care, (ii) acknowledgement of young people as a distinct group, (iii) adjustment of care as the young person develops, (iv) empowerment of the young person by embedding health education and health promotion and (v) interdisciplinary and interorganisational work. Also, some controversies were identified within most dimensions. 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.

Developmentally appropriate healthcare for young people: a scoping study.

BACKGROUND: There is increasing recognition of the importance of providing quality healthcare to meet the biopsychosocial needs of young people. 'Developmentally appropriate healthcare' (DAH) for young people is one term used to explain what these services consist of. However, this term remains ill defined. AIMS: (i) To analyse the use of the term DAH in the scientific literature and (ii) to identify and explore the range of meanings attributed to the term in relation to young people. METHODS: A scoping review was conducted to map the presence of the term DAH in the literature. To analyse the use and meanings attributed to the DAH terminology, data underwent qualitative content analysis using a summative approach. RESULTS: 62 papers were selected and subjected to content analysis. An explicit definition of DAH was provided in only 1 of the 85 uses of the term DAH within the data set and in none of the 58 uses of the prefix 'developmentally appropriate'. A link between the use of the term DAH and the domains of adolescent medicine, young people, chronic conditions and transitional care was identified; as were the core ideas underpinning the use of DAH. CONCLUSIONS: There is a need for consistency in the use of the term DAH for young people, the related stage-of-life terminology and age range criteria. Consensus is now needed as to the content and range of a formal conceptual and operational definition.