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

Title

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

Creator

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

Publisher

Children's Health Care.

Date

2019

Subject

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

Description

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.

Citation List Month

July 2019 List

Collection

Citation

Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S, “Parents' experiences of services for their child with a life-limiting neurodevelopmental disability,” Pediatric Palliative Care Library, accessed September 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16353.

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