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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.

BACKGROUND: Type 1 diabetes (T1D) in children and young people is increasing worldwide with a particular increase in children under the age of 5 years. Fewer than one in six children and young people achieve glycosylated fraction of haemoglobin (HbA1c) values in the range identified as providing best future outcomes. There is an urgent need for clinic-based pragmatic, feasible and effective interventions that improve both glycaemic control and quality of life (QoL). The intervention offers both structured education, to ensure young people know what they need to know, and a delivery model designed to motivate self-management. OBJECTIVE: To assess the feasibility of providing a clinic-based structured educational group programme incorporating psychological approaches to improve long-term glycaemic control, QoL and psychosocial functioning in a diverse range of young people. DESIGN: The study was a pragmatic, cluster randomised control trial with integral process and economic evaluation. SETTING: Twenty-eight paediatric diabetes services across London, south-east England and the Midlands. RANDOMISATION: Minimised by clinic size, age (paediatric or adolescent) and specialisation (district general hospital clinic or teaching hospital/tertiary clinic). ALLOCATION: Half of the sites were randomised to the intervention arm and half to the control arm. Allocation was concealed until after clinics had consented and the first participant was recruited. Where possible, families were blind to allocation until recruitment finished. PARTICIPANTS: Forty-three health-care practitioners (14 teams) were trained in the intervention. The study recruited 362 children aged 8-16 years, diagnosed with T1D for > 12 months, with a mean 12-month HbA1c level of ≥ 8.5%. INTERVENTION: Two 1-day workshops taught intervention delivery. A detailed manual and resources were provided. The intervention consists of four group education sessions led by a paediatric diabetes specialist nurse with another team member. OUTCOMES: The primary outcome was glycaemic control, assessed at the individual level using venous HbA1c values, measured at baseline, 12 and 24 months. Secondary outcomes were directly and indirectly related to diabetes management, including hypoglycaemic episodes, hospital admissions, diabetes regimen, knowledge, skills and responsibility for diabetes management, intervention compliance, clinic utilisation, emotional and behavioural adjustment, and general and diabetes-specific QoL. PROCESS EVALUATION: Questionnaires, semistructured interviews, informal discussion following observation sessions, fieldwork notes and case note review were used to collect qualitative and quantitative data from key stakeholder groups at specific time points in the trial. STATISTICAL ANALYSES: Primary and secondary analyses were intention-to-treat comparisons of outcomes at 12 and 24 months, using analysis of covariance with a random effect for clinic. Prespecified subgroup analyses based on age, gender, initial HbA1c value and socioeconomic status were estimated from models that included an interaction term. The economic analysis compared long-term costs and predicted quality-adjusted life-years (QALYs). RESULTS: The intervention did not improve HbA1c at 12 months [intervention effect 0.11; 95% confidence interval (CI) -0.28 to 0.50; p = 0.584] or 24 months (intervention effect 0.03; 95% CI -0.36 to 0.41; p = 0.891). A total of 298/362 patients (82.3%) provided blood samples at 12-month follow-up, and 284/362 (78.5%) provided blood samples at 24-month follow-up. Follow-up questionnaires were completed by 307 patients (85.3%) at 12 months and by 295 patients (81.5%) at 24 months. Intervention group parents at 12 months (95% CI 0.74; 0.03 to 1.52) and young people at 24 months (0.85; 95% CI 0.03 to 1.61) had higher scores on the diabetes family responsibility questionnaire. Young people reported reduced happiness with body weight at 12 months (-0.56; 95% CI -1.03 to -0.06). Only 68% of groups were run. Of the 180 families recruited, 96 (53%) attended at least one module. Reasons for low uptake included difficulties organising groups, and work and school commitments. Young people with higher HbA1c levels were less likely to attend. Parents and young people who attended groups described improved family relationships, improved knowledge and understanding, greater confidence and increased motivation to manage diabetes. Twenty-four months after the intervention, nearly half of the young people reported that the groups had made them want to try harder and that they had carried on trying. A high-quality, complex, pragmatic trial of structured education can be delivered alongside standard care in NHS diabetes clinics. Health-care providers benefited from behaviour change skill training and can deliver pragmatic aspects of a National Institute for Health and Care Excellence (NICE)-compliant structured education programme after relatively brief training. The process evaluation provides insight into aspects of the model, and highlights strengths and aspects that may have contributed to the failure to influence primary and secondary outcomes. Current NHS practice dominates CASCADE (Child and Adolescent Structured Competencies Approach to Diabetes Education) in that it achieves the same number of QALYs at a lower cost. The mean cost of providing the intervention was £5098 per site or £683 per child. Members of paediatric diabetes services trained to deliver the CASCADE structured education package using behaviour change techniques did not improve glycaemic control in patients compared with control subjects 1 and 2 years after the intervention. The training workshops for practitioners were well evaluated; however, more intensive training was needed. The intervention cost £683 per patient but was not cost-effective because it did not improve metabolic control. CONCLUSIONS: A high-quality, complex, pragmatic trial of structured education can be successfully conducted alongside standard care in NHS diabetes clinics. Pragmatic components of a NICE-compliant structured education programme can be successfully delivered following a relatively brief 2-day training while paediatric health-care professionals benefit from training in behaviour change skills. The study provides invaluable information on barriers and opportunities regarding future, similar interventions. A low dropout rate and good attendance for the subgroup that attended the intervention suggests there might be improved uptake if offered to young people with lower HbA1c. Testing whether this approach can be more successful with a robust ongoing supervisory element should be a target of further research. TRIAL REGISTRATION: Current Controlled Trials ISRCTN52537669. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 20. See the NIHR Journals Library website for further project information.

Social Work Practices (SWPs) were established in England in 2009 to deliver social work services to looked after children and care leavers. The introduction of independent social work-led organisations generated controversy focused on issues such as the privatisation of children's services and social workers' conditions of employment. This paper reports early findings from the evaluation of four of these pilots, drawing on interviews with children and young people, staff, and local authority and national stakeholders. The SWPs assumed a variety of organisational forms. The procurement process was demanding, with protracted negotiations over matters such as budgetary control and providing a round-the-clock service. Start-up was facilitated by an established relationship between the SWP provider and the local authority. Once operational, SWPs continued to rely on local authorities for various functions; in most cases, local authorities retained control of placement budgets. Levels of consultation and choice offered to children and young people regarding the move to an SWP varied considerably. Children's understanding about SWPs was generally low except in the pilot where most children retained their original social worker. These early findings show some dilution of the original SWP model, while the pilots' diversity allows the benefits of particular models to emerge.