Search

BACKGROUND: Young people with learning disabilities are frequently underrepresented in research accounts. This study describes the experiences of young people moving from the care system. METHODS: We scoped the English and Swedish literature for first-hand accounts and interviewed four young people with learning disabilities leaving the English care system. We combined findings from both sources. FINDINGS: “Grey” and campaigning literature are more likely than academic studies to include the voices of service users, but even then, the voices tend to be those of professional or family carers. Both the literature and interviews demonstrate young peoples’ awareness and understanding of the social as well as financial benefits of work. Good foster care could be precarious, and young people in unhappy placements lacked direction. Exploitation around a young person's housing and finances could be problems. There was evidence of “threshold” difficulties in accessing services. CONCLUSIONS: Despite an NHS commitment to listening to users in the UK, and similar aspirations in Sweden, our search of the literature identified few studies reporting care leavers' with learning disabilities own words. Our data add to the voices of a group frequently silent or silenced. We found evidence of resilience and hope as well as difficulties and frustrations. The accounts in the literature and our interviews provide data on what it can be like to try to operate “the system.” The people we spoke with and those whose accounts we found in the literature were thoughtful and engaging. They provide an important source of knowledge for policy and practice.

Young unaccompanied asylum seekers have been portrayed as vulnerable, resilient or both. Those granted residency in Europe are offered support by health and social care systems, but once they leave the care system to make independent lives, what part can these services play? Our review of research with migrants who have been in care in Sweden and the United Kingdom found evidence of unmet need, but little research describing their own views of services. The limited published evidence, supplemented by interviews with care leavers in a UK inner city, suggests that in defining health needs, young people emphasise housing, education, employment and friendship over clinical or preventative services. Some felt well supported while others described feeling vulnerable, anxious, angry or sad. These experiences, if linked with the insensitivity of even one professional, could lower young people’s expectations of healthcare to the extent that they avoided contact with service providers. In supporting young migrants’ resilience to meet everyday challenges, friendly support from peers, carers and professionals was important. They needed determined advocacy at key moments. The different challenges for the Swedish and UK health and welfare systems along with the resilience/vulnerability trajectory are described.

Background Young people in residential or foster care experience multiple transitions around their 18th birthday without the long term and consistent support from their family of origin that most of their peers can expect. We report a mixed methods qualitative study of transitions across health and social care services for children leaving care, providing narratives of what young people described as positive, and what they and professionals think might be improved. Methods Data were collected in participatory meetings and individual interviews between young people and researchers (n = 24) and individual interviews with practitioners (n = 11). In addition to discussion and interview techniques, we used pictorial and other participatory methods. Interviews were coded by three members of the team and differences resolved with a fourth. Our analysis draws on thematic and framework approaches. Results Health was rarely at the top of any young person's agenda, although gaps in health care and exceptional care were both described. Housing, financial support and education took priority. Young people and professionals alike emphasized the importance of workers prepared to go the extra mile; of young people being able to contact professionals; and professionals being able to contact one another. Conclusions Policy and practice aspirations for care leavers recommend gradual change but transfer rather than transition continues to be described by care leavers. Our data support the need for transition as a long-term process, with children and young people having early opportunities to prepare for citizenship.

INTRODUCTION: Type 1 diabetes (T1D) in children and adolescents is increasing worldwide with a particular increase in children

Background and aim This paper explores the tension between participation and protection at a time when professionals are encouraged to engage patients and citizens in both the “R” (research) and the “D” (development) of services. Concerns to protect groups perceived as “vulnerable” can mean that not everyone is afforded the same opportunity to participate. Methods Our data draw on the literature and secondary analysis of a study designed to explore the experiences of young peoples' transitions from health and social care to adult services. In seeking ethics approval, tensions between protection and participation were evident, and once the study was concluded, we reviewed group and individual interview transcripts, team email correspondence, and research notes. We considered aspects of participation, co‐production, involvement, and research design in relation to the ethics concerns raised. Findings In terms of privacy and confidentiality, young people were skilled at setting their own boundaries. Whilst young people leaving foster and residential care are frequently perceived as vulnerable, those in our study asserted their agency and desire to be “visible.” Some experienced conditions aimed at protecting their confidentiality or safety as oppressive. Conclusion The risk reduction strategies that often underpin ethics approval processes can also carry risks. Limiting opportunities to play a part in research for people who may already be excluded on age, health, language, or other grounds reduces the range of lay knowledge on which we can draw, limits generalisability, and potentially adds to damaging social exclusion. Learning how to participate effectively is a life skill., Young people leaving care are frequently perceived as vulnerable, but those in our study asserted their agency and desire to be ‘visible’. The risk reduction strategies which often underpin ethics approval processes can also carry risks. Limiting opportunities to play a part in research for people who may already be excluded on age, health, language or other grounds reduces the range of lay knowledge on which we can draw, limits generalisability and potentially adds to damaging social exclusion.

This paper explores the priorities of young people who arrived in England or Sweden as unaccompanied minors and are leaving the care of the state to transition to adult life. Policy and practice for these young people are themselves in transition in Europe, and we aim to contribute to the slender first person qualitative evidence base for those delivering services. Our methods comprised a scoping review of scholarly and grey literature, and group and individual interviews. Despite a commitment in both countries to listening to the voices of young people, we identified few studies representing the voices of unaccompanied care leavers. In both the literature and our interviews, health in a clinical sense was rarely among their priorities. Their accounts focused on the determinants of health, and in particular housing, education, food and employment. In Sweden, where services are universal rather than targeted, the Health and Social Care Board (Socialstyrelsen) notes the paradox of unaccompanied children being surrounded by adult supporters, none of whom takes overall responsibility for the young person and his/her everyday life. Those we spoke to describe the vital role played by foster carers, health and social care professionals and friends that they could rely on. The young people whose narratives appear in the research literature and those in our own sample are working hard to cope with multiple transitions and to manage health in its widest sense, whether by finding the right place to live or attending to their education or training.