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Open Access Research article

Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: qualitative study of parents’ accounts

Ian Carolan2, Trish Smith2, Andy Hall1 and Veronica M Swallow13*

Author Affiliations

1 School of Nursing, Midwifery and Social Work, Faculty of Medical and Human Sciences, Manchester Academic Health Sciences Centre, University of Manchester, Oxford Road, Manchester M13 9PT, UK

2 Royal Manchester Children’s Hospital, Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester M13 9WL, UK

3 School of Nursing, Midwifery and Social Work, University of Manchester, Oxford Road, Manchester M13 9PL, UK

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BMC Health Services Research 2014, 14:292  doi:10.1186/1472-6963-14-292

Published: 7 July 2014

Abstract

Background

Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management.

Methods

The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept.

Results

Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents’ efficacy of care and Fear of the child’s health failing; and (3) Belonging/Becoming (Parents defining task and group members’ worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease.

Conclusions

Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child’s healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions.

Keywords:
Social Learning theory; Self-efficacy; Developing internet resources; Chronic kidney disease (CKD); Children and young people; Parent; Knowledge; Psychosocial support; Communities of practice