Transforming nursing care for children with serious long-term conditions: A mixed methods exploration of the impact of Roald Dahl Specialist Nurses in the United Kingdom

Abstract

PurposeA new model of paediatric nursing, funded initially by a charitable organisation working in partnership with UK healthcare providers, was implemented to support children living with serious long-term conditions. This study explored, from the perspective of multiple stakeholders, the impact of services provided by 21 ‘Roald Dahl Specialist Nurses’ (RDSN) within 14 NHS Trust hospitals. Design and methodsA Mixed Methods Exploratory design commenced with interviews with RDSNs (n = 21) and their managers (n = 15), alongside a medical clinician questionnaire (n = 17). Initial themes (constructivist grounded theory) were validated through four RDSN focus groups, and informed development of an online survey of parents (n = 159) and children (n = 32). Findings related to impact were integrated using a six-step triangulation protocol. ResultsZones of significant impact included: Improving quality and experience of care; Improved efficiencies and cost-effectiveness; Provision of holistic family-centred care; and Impactful leadership and innovation. The RDSNs forged networks across inter-agency boundaries to safeguard the child and enhance the family experience of care. RDSNs delivered improvements across a range of metrics, and were valued for their emotional support, care navigation and advocacy. ConclusionsChildren living with serious long-term conditions have complex needs. Regardless of the specialty, location, organisation or service focus, this new model of care crosses organisational and inter-agency boundaries to ensure that the healthcare delivered has maximum impact. It has a profoundly positive impact on families. Practice implicationsThis integrated and family-centred model of care is strongly recommended for children with complex needs crossing organisational divides.