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

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.

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.

Case study.

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.

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.

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.

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.