Evaluating self-care support for children and young people with long term conditions.

Aim of the study To describe and evaluate current self care models for children with long term conditions. Specific objectives 1. To identify and describe the range and type of self-care models for children with long-term conditions. 2. To examine how different models support self-care by children and their parents and assess their success from the perspectives of children, parents and professionals. 3. To identify the factors which promote and inhibit the support of self-care in relation to children/young people with long-term conditions. 4. To investigate how professionals can best support self-care Background Children with long-term conditions face a life time of health management and how successfully they do this and adapt their lifestyles can influence later outcomes. However, little is known about the range or prevalence of self-care models for children with long-term conditions or how effective they are in supporting self-care. While recent research suggests that it is inappropriate to transfer models used to support adult self-care across to children, there is a lack of evidence on which are the most appropriate models and methods to engage young people and their parents in self-care. The study will focus both on models used in four specific long-term conditions as well as the more emergent generic self-care models. Methods Stage 1 will consist of a systematic review and meta-synthesis of the literature to identify and describe different self-care models as the first stage of developing a typology. Effective components of models will be identified. In stage 2 stakeholder/reference groups of experts in the area (with lay and professional representatives) will be formed to advise the research team on all aspects of the study, contributing directly to typology development and selection of case study sites. The group will also advise on current and emerging models. In stage 3 a telephone survey of health service organisations will be conducted to investigate how self-care is being developed and the models currently in operation. Survey data will be analysed using SPSS. Stages 1,2 and 3 will provide the data and expertise to use in constructing typologies of different self-care models for children/young people with long-term conditions and will provide a basis for sampling models for in-depth study (stage 4). In stage 4 case studies of six purposefully sampled models (sampled on the basis of the literature review, stakeholder consultation and telephone survey) will be conducted. We will use self-regulation theory and a whole system approach to examine in depth young people’s, parents and lay/professional’s perception of the effectiveness of the model, its child/family centredness, enablers and barriers to self-care and how the model relates to and integrates with self-help support beyond the model itself. Multiple methods of data collection will be used and the interview and observational data will be analysed using Framework Analysis. Data will be analysed both within and across case study models in terms of our theoretical framework and child/family centredness of the model.