Perceptions of effective self‐care support for children and young people with long‐term conditions

Aims and objectives. To: (1) Examine children’s/young people’s, parents’ and professionals’/workers’ perceptions of the effectiveness of different models of self‐care support, (2) identify factors that support and inhibit self‐care and (3) explore how different models integrate with self‐care support provided by other organisations. Background. Childhood long‐term illness has been largely overlooked in government policy and self‐care support under‐researched when compared with adults. 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. Design. Case study. Methods. Case studies of six different models of self‐care support were conducted using multiple methods of data collection in 2009. Semi‐structured interviews were conducted with 26 young people, 31 parents and 36 self‐care support providers. A sample of self‐care support activities was observed and relevant documents reviewed. Data were analysed using the Framework approach. Results. The effectiveness of self‐care support projects was defined in relation to four dimensions – providing a sense of community, promoting independence and confidence, developing knowledge and skills and engaging children/young people. Self‐care support provided by schools appeared to be variable with some participants experiencing barriers to self‐management and inclusion. Participants self‐referred themselves to self‐care support projects, and there was a lack of integration between some projects and other forms self‐care support. Conclusion. This study adds to knowledge by identifying four dimensions that are perceived to be central to effective self‐care support and the contextual factors that appear to influence access and experiences of self‐care support. Relevance to clinical practice. Study findings can inform the development of self‐care support programmes to meet the needs of individuals, families and communities. In addition, the findings suggest that healthcare professionals need to support schools if young people with long‐term conditions are to have the same educational and social opportunities as their peers.