• Open Access

Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature

Authors

  • Joanna Smith BSc (Hons) MSc PhD RSCN,

    Senior Lecturer in Children and Young People's Nursing, Corresponding author
    1. School of Nursing, Midwifery and Social Work, University of Salford, Salford, Greater Manchester, UK
    • Correspondence

      Joanna Smith BSc (Hons) MSc PhD RSCN

      School of Nursing, Midwifery and Social Work

      University of Salford

      Mary Seacole Building

      Frederick Road Campus

      Salford

      Greater Manchester M6 6PU

      UK

      E-mail: j.smith3@salford.ac.uk

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  • Francine Cheater MA (Hons) PhD RGN,

    Professor in Nursing Sciences
    1. School of Nursing Science, University of East Anglia, Norwich, UK
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  • Hilary Bekker BSc MSc PhD

    Senior Lecturer in Behavioural Sciences
    1. Institute of Health Sciences, University of Leeds, Leeds, UK
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Abstract

Background

Living with a child with a long-term condition can result in challenges above usual parenting because of illness-specific demands. A critical evaluation of research exploring parents' experiences of living with a child with a long-term condition is timely because international health policy advocates that patients with long-term conditions become active collaborators in care decisions.

Methods

A rapid structured review was undertaken (January 1999–December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents' experiences of living with a child with a long-term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria.

Results

Thirty-four studies met the inclusion criteria. The impact of living with a child with a long-term condition related to dealing with immediate concerns following the child's diagnosis and responding to the challenges of integrating the child's needs into family life. Parents' perceived they are not always supported in their quest for information and forming effective relationships with health-care professionals can be stressful. Although having ultimate responsibility for their child's health can be overwhelming, parents developed considerable expertise in managing their child's condition.

Conclusion

Parents' accounts suggest they not always supported in their role as manager for their child's long-term condition and their expertise, and contribution to care is not always valued.

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