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Home-Based Care for Special Healthcare Needs: Community Children’s Nursing Services

Carter, Bernie; Coad, Jane; Bray, Lucy; Goodenough, Trudy; Moore, Andrew; Anderson, Christine; Clinchant, Andre; Widdas, David

doi: 10.1097/NNR.0b013e31825b6848

Background: Community children’s nursing services (CCNS) provides nursing and supportive care, ranging from relatively simple to highly technological interventions, to children and young people (0–18 years) within the family home.

Objectives: The aim of this study was to elicit the perspectives on and experiences about CCNS in England in relation to things that are working well or that could be improved and the vision for services.

Methods: Using a qualitative approach, underpinned by an Appreciative Inquiry philosophy, researchers worked closely with advisory groups (six children and young people, four parents, and five professionals) to design and implement the study. Arts-based participatory appreciative workshops were held in nine regional locations in England; shared activities were undertaken to elicit participants’ experiences. Participants unable to attend the workshops were able to contribute via semistructured interview (face to face or by telephone) or by a dedicated blog or e-mail.

Results: Thematic analysis was used, and 214 people participated: families (n = 82), children (n = 27), and professionals or stakeholders (n = 105). Things that were working well were effective communication, robust leadership, actively enabling the child’s care to be sustained at home, and partnerships based on mutual trust. Problems relating to feelings of marginalization, ineffective commissioning, under provision of services and hours of service availability, lack of equipmentor resources, and poor communication between services and settings were areas of concern. The vision for CCNS was for a flexible, equitable, and accessible service that supported children’s and families’ needs and choices and which enabled parents to be parents first rather than caregivers.

Discussion: Care at home reduces the disruption to children’s and families’ lives and can empower them to make decisions and control routines and practices. Having CCNS situated within larger teams with strong interdisciplinary and transdisciplinary practices seems to offer the best benefits for children and families. Findings from this study have directly influenced government policy and practice. Further research is needed to determine efficacy of particular models and practices.

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Bernie Carter, PhD, is Professor of Children’s Nursing, University of Central Lancashire (and Alder Hey Children’s NHS Foundation Trust), Preston, United Kingdom.

Jane Coad, PhD, is Professor in Children and Family Nursing, Coventry University, West Midlands, United Kingdom.

Lucy Bray, PhD, is Senior Research Fellow, Edge Hill University (and Alder Hey Children’s NHS Foundation Trust), Ormskirk, United Kingdom.

Trudy Goodenough, PhD, is Research Fellow, University of the West of England, Bristol, United Kingdom.

Andrew Moore, PhD, is Research Associate, Keele University, Staffordshire, United Kingdom.

Christine Anderson, is Parent Researcher, University of Central Lancashire, Preston, United Kingdom.

Andre Clinchant, BSc, is Team Manager and Pediatric Oncology Outreach Nurse, Musgrove Park Hospital, Taunton, United Kingdom.

David Widdas, MSc, is Consultant Nurse, Children With Complex Healthcare Needs, South Warwickshire NHS Foundation Trust, United Kingdom.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (

Accepted for publication December 5, 2011.

The authors thank the children, parents, and professionals who gave up their time to engage in the study.

The authors have no funding or conflicts of interest to disclose.

Corresponding author: Bernie Carter, PhD, University of Central Lancashire, Preston, Lancashire, PR1 2HE, United Kingdom (e-mail:

© 2012 Lippincott Williams & Wilkins, Inc.