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

• Published in: Journal of pediatric nursing 2023-05, Vol.70, p.90-102
• Main Authors: Nightingale, Julie, Ali, Nancy, Lewis, Robin, Ibbotson, Rachel, Monks, Helen, Urquhart-Kelly, Tanya, Saunders, Lesley
• Format: Article
• Language: English
• Subjects: Advanced practice nursing; Care navigation; Child; Delivery of Health Care; Family-centered care; Humans; Nurses; Parents - psychology; Pediatric Nursing; Specialist nursing; United Kingdom
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2023.02.004

A 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. A 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. Zones 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. Children 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. This integrated and family-centred model of care is strongly recommended for children with complex needs crossing organisational divides. •The scope and scale of the RDSN role is wider than a ‘traditional’ nursing role.•The charitable funding model supports RDSNs to bridge organisational boundaries.•RDSNs are highly valued by families for emotional support and care navigation.•RDSNs are pivotal in preventing avoidable hospital admissions or visits to A&E.•The RDSNs enable children and families to become more involved in decision-making.