Home-based care for special healthcare needs: community children's nursing services.

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 equipment or 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.