Parents' experiences of services for their child with a life-limiting neurodevelopmental disability

Parents' experiences of services for their child with a life-limiting neurodevelopmental disability

Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S

Children's Health Care.

2019

article; child; female; human; major clinical study; male; staff; funding; interview; nervous system malformation; quantitative analysis

This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.

July 2019 List