The burden of proof: The process of involving young people in research.

Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large-scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face-to-face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.

'You've come to children that are in care and given us the opportunity to get our voices heard': The journey of looked after children and researchers in developing a Patient and Public Involvement group.

BACKGROUND: Looked after children and care leavers (denoted as LAC) are often described as a 'hard to reach' group of young people, and their voices are rarely sought to inform academic research. METHODS: This paper reports on experiences and reflections of a group of children and young people and academic researchers who developed a Patient and Public Involvement (PPI) group that was set up in the context of an ongoing health service intervention trial with LAC. SETTING AND PARTICIPANTS: Eighteen qualitative semi-structured interviews were conducted with seven LAC, the participation officer within a North East Children in Care Council and the four researchers involved in developing and facilitating the PPI group. PPI sessions (n = 9) each approximately 1 hour in length were conducted over an 18-month period. ANALYSIS: The qualitative interviews were transcribed verbatim. Thematic analysis was used to analyse the data, and direct quotes are used within the paper. MAIN OUTCOMES: The LAC used the PPI group to produce a 5-minute video to highlight why they think young people should be involved in research. Overall findings suggested that it was feasible to develop a research-related PPI group with LAC. Findings from the research were used to co-develop 'top tips' of working with vulnerable young people such as looked after children. CONCLUSION: This paper has shown that PPI with LAC can be done if a co-production approach to research is taken. It also suggests that assumptions regarding the capabilities of young people as researchers need to be re-evaluated.

Delivering developmentally appropriate health care: Roles for psychologists as members of the multi-disciplinary health care team.

There is increasing global attention on the health and wellbeing needs of young people. Preventive and proactive approaches will likely lead to the clearest dividends for young people, their own children and wider society. A brief overview of the international context for young people's health care is given. As well as influencing policy, there are important roles for the health care team, including psychologists, to influence the organisations they work within, advocating for the needs of young people and their families. This is the focus of this article. The concept of developmentally appropriate health care (DAH) for young people is explored. It could help when planning services and approaches that respond to the needs of young people. Building relationships is likely to be key, to connect with young people to help them make health and wellbeing decisions, and provide individualised support. The 'connectedness' research could also be helpful in looking beyond the health care evidence. A key challenge for psychologists and their multi-disciplinary health care colleagues, in practice and research, is to move away from a reliance on binary, easier-to-measure health and wellbeing outcomes and, instead, find ways to promote and measure developmental outcomes that are meaningful to young people and their families.

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.

The influence of diabetes upon adolescent and young adult development: a qualitative study.

UNLABELLED: It is not clear how developmentally appropriate healthcare services for adolescents (11-15) and young adults (16-25) should be provided. AIMS: First, to describe and understand the influence of diabetes upon psychosocial development and second, to highlight the implications for healthcare teams. DESIGN: Given the heterogeneity of findings, lack of conceptual clarity and lack of quantitative measures, qualitative semi-structured interviews were used, to define more clearly the constructs significant to young people. METHODS: People aged 16-25 registered with one secondary care diabetes service, across two districts in north-east England were contacted. Nineteen interviews were conducted and analysed using a Framework Approach. RESULTS: Diabetes can impact upon personal identity and self-concept. Peer support can buffer from negative effects, especially if young people control the disclosure of their diabetes. In coming to rely more on peers, participants continue to value the safe base of their family, especially at times of change and challenge. A key challenge appears to be coming to terms with risk and mortality. CONCLUSIONS: Health care services need to support young people with self-care but must also understand and respond to the social and personal complexities of growing-up with a long-term health condition. Psychologists may have a role in promoting and supporting such an approach.

Young adults' (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study.

Managing the multiple demands of a chronic condition whilst negotiating the developmental tasks of adolescence and young adulthood is a process that is neither well described nor understood, particularly in relation to providing developmentally appropriate health care for young people. The importance of this issue is starting to be reflected within the literature, and although research into models of service delivery is emerging, a lack of user involvement in service development is apparent. This qualitative, user involvement study aimed to describe and understand the considered opinions of 19 young adults with diabetes who were receiving secondary care services about the provision of diabetes services for young people. The findings, gathered using semistructured interview and focus group methods, have potentially wide-reaching implications across primary and secondary health care, and across agencies providing services to children and young people, in terms of facilitating a person's transition through adolescence and into young adult life. Participants suggested key issues to address when developing services for young people, including staff consistency, civility, clinic structures which help a person navigate the health care system, provision of age-specific information, and support in relation to a range of health, emotional, social and developmental needs. Health care professionals can help young people to meet the expectations upon them as autonomous service users by modelling appropriate relationships, helping them to acquire skills and knowledge, and overcome barriers to them becoming active participants in their health care and achieving social participation in a fuller sense. It is somewhat arbitrary to delineate between adolescence and young adulthood in terms of age alone, but in this paper, 'adolescence' refers to the period between 11 and 15 years of age, and 'young adulthood' between 16 and 25 years of age. The phrase 'young people' will also be used to refer to people between 11 and 25 years.