A realist evaluation of a collaborative model to support research co-production in long-term care settings in England: the ExCHANGE protocol.

BACKGROUND: Collaborative working between academic institutions and those who provide health and social care has been identified as integral in order to produce acceptable, relevant, and timely research, and for outputs to be useful and practical to implement. The ExCHANGE Collaboration aims to bring together researchers and people working, living in and visiting care homes to build capacity, share and mobilise knowledge, and identify key areas for future research. This paper describes an embedded, formative, realist and theory-driven evaluation which aims to gather information about how successful the ExCHANGE Collaboration is perceived to be in achieving its aims. An existing realist programme theory from the literature - Closer Collaboration - will be supplemented by two substantive theories: Co-production and Knowledge Brokering. This will result in an initial programme theory which will be tested by this formative evaluation to refine understanding of how the ExCHANGE Collaboration works. METHODS: The evaluation will employ mixed qualitative methods, including: analysis of documents such as feedback forms, Knowledge Broker journal/diary, event attendance records, risk and issues logs and other relevant paperwork gathered as part of project delivery; observations of events/activities; and interviews with care home providers and staff, care home residents, residents' family members, and researchers who are involved in the project (both project design/delivery, and also attendance or involvement in project activities/events). Framework Analysis will be used to interpret the data collected; analysis will be strategic, by focusing on particular key areas of importance in the developing theory of how the ExCHANGE Collaboration might achieve change. RESULTS: The results of this study are expected to be published in 2022. DISCUSSION: This evaluation will investigate how successful the ExCHANGE Collaboration is perceived to be in achieving its aims, in what way, in which contexts, and how this may differ for those involved. It will do this by testing an initial programme theory about how the collaboration works, for whom, under which circumstances, and in what way. Findings will be shared through written publication, an end of project learning event for those involved/interested in the project, and a lay summary to be made publically available.

Leaving foster or residential care: a participatory study of care leavers' experiences of health and social care transitions.

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.

Development of the Oxford ankle foot questionnaire: finding out how children are affected by foot and ankle problems.

BACKGROUND: A large number of children are affected by foot and ankle problems owing to congenital deformities, clinical syndromes, neuromuscular conditions or trauma. This study aimed to identify how children's lives are affected by foot and ankle problems from the child's perspective as the first stage in developing a family-assessed instrument. METHODS: This was a qualitative study using focus groups involving children with a variety of foot and ankle problems aged 5-7, 8-11 and 12-15 years, and separate concurrent groups for their parents. The focus groups were child-centred and involved creative activities; there were two main exercises. The first activity involved agreeing or disagreeing with several statements about children with foot and ankle problems; the second activity explored a typical 'day in the life' of a child with a foot or ankle problem. All the groups were audio-recorded and transcribed; grounded theory and comparative content analysis were used to identify and code themes participants reported as important. RESULTS: The groups ran successfully with children in all ages. Consistent themes identified by all groups were; (i) specific activities that were more difficult; (ii) physical symptoms; (iii) reduced participation in certain life situations; and (iv) self-consciousness. There were few differences in the issues raised by each age group although the life situations children encounter tend to become more complex as they get older; there is also the difficulty of negotiating a larger school campus at senior compared with junior school. There were no differences in the issues raised by children and their parents. CONCLUSIONS: Focus groups involving creative child-centred activities were used successfully to elicit children's experience of their health problems. In addition to expected activity limitations and physical symptoms some children with foot or ankle problems endure participation restrictions and self-consciousness that are exacerbated by the behaviour of other people or their environment, particularly at school. The findings of this study informed the development of a questionnaire to measure how severely children are affected by foot or ankle problems from the child's perspective.

Putting public health evidence into practice: increasing the prevalence of working smoke alarms in disadvantaged inner city housing.

STUDY OBJECTIVES: The UK government recommends that local authorities install battery operated smoke alarms to prevent fire related injury. However, a randomised controlled trial of smoke alarm installation in local authority housing found a low level of working alarms at follow up. Qualitative work, which accompanied the trial explored barriers and levers to the use of this public health intervention. DESIGN: Semi-structured group and individual interviews were conducted with a sample of the adult participants in a randomised controlled trial of free smoke alarm installation. Group interviews and "draw and write" exercises were conducted with children at a local primary school. PARTICIPANTS: A sample of trial participants and primary school children in the trial neighbourhood. SETTING: An inner city housing estate in central London. MAIN RESULTS: The main barrier to smoke alarm use was the distress caused by false alarms. Although trial participants considered themselves to be at high risk for fires and would recommend smoke alarms to others, respondents' reports on the distress caused by false alarms suggest that people balance immediate and longer term risks to their health and wellbeing when they disable alarms. CONCLUSIONS: This study identified some of the reasons for the low level of functioning smoke alarms, and problems experienced with alarms. The results have implications for the implementation of this public health intervention. The effectiveness of smoke alarm installation could be improved if alarm manufacturers and those responsible for implementation programmes considered ways of tackling the issues raised in this study.