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

Susan Kirk, Susan Beatty, Peter Callery, Linda Milnes, Steven Pryjmachuk

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    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. © 2012 Blackwell Publishing Ltd.
    Original languageEnglish
    Pages (from-to)1974-1987
    Number of pages13
    JournalJournal of Clinical Nursing
    Issue number13-14
    Publication statusPublished - Jul 2012


    • Case study
    • Children
    • Chronic illness
    • Families
    • Nurses
    • Nursing
    • Self-care
    • Self-management
    • Young people


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