The optimal service for children and young people with complex neurodevelopmental disabilities: Findings from an integrative literature review

Abstract

BACKGROUND: Children with neurodevelopmental disabilities (NDDs) have complex therapeutic needs which require tailored models of service delivery.

OBJECTIVE: To profile the characteristics of the optimal service for children with complex neurodevelopmental disabilities in policy and professional guidelines in addition to the empirical literature.

METHODS: An integrative review was conducted. A systematic search of electronic databases (n=4), and a manual search of policy and professional guidelines was completed in October 2023. A total of 18 papers were included in the analysis. Qualitative content analysis was undertaken independently by two researchers.

RESULTS: Five descriptive categories were identified across the dataset: (i) A responsive and accessible service with shared decision-making, (ii) Empowering service users as partners, (iii) Evidence-based interventions and meaningful outcomes, (iv) Team working for an equitable and accountable service, and (v) Do no harm.

CONCLUSIONS: A coherent vision of the optimal services for children and young people with complex NDDs is evident across policy, professional guidelines and empirical literature. There appears to be a discord between this vision and the realities of practice in the Irish healthcare context. Implementation science theories and frameworks have the potential to bridge the research-practice gap and improve services for this vulnerable population.