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

Joanna Smith; Francine Cheater; Hilary Bekker

doi:10.1111/hex.12040

journal article Jan 14, 2013

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

Joanna Smith Francine Cheater Hilary Bekker

Health Expectations Vol. 18 No. 4 pp. 452-474 · Wiley

View at Publisher Save 10.1111/hex.12040

Abstract

AbstractBackgroundLiving 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.MethodsA rapid structured review was undertaken (January 1999–December 2009) in accordance with theUnitedKingdomCentre forReviews andDissemination guidance. Three data bases (MEDLINE,CINAHL,PSYCINFO) were searched and also hand searching of theJournal ofAdvancedNursing andChild:Care,Health andDevelopment. Primary research studies written inEnglish 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.ResultsThirty‐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.ConclusionParents' 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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Details

Published: Jan 14, 2013
Vol/Issue: 18(4)
Pages: 452-474
License: View

Authors

J

Joanna Smith

School of Nursing, Midwifery and Social Work University of Salford Salford Greater Manchester UK

F

Francine Cheater

School of Nursing Science University of East Anglia Norwich UK

H

Hilary Bekker

Institute of Health Sciences University of Leeds Leeds UK

Cite This Article

Joanna Smith, Francine Cheater, Hilary Bekker (2013). Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature. Health Expectations, 18(4), 452-474. https://doi.org/10.1111/hex.12040

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

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