ABSTRACT 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.

中文翻译：

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父母为限制生命的神经发育障碍的孩子提供服务的经验

摘要这项研究探索了父母使用混合方法为有生命限制的神经发育障碍（LLNDD）儿童提供服务的经验。该研究包括定量调查（n = 63）和定性访谈（n = 12），重点是整合发现以识别更高层次的见解。结果表明，父母的经历是好坏参半，表现出比积极经历更消极的体验。有人说获得服务有问题，障碍包括资金和地域不平等。有益的方面包括员工的态度和人际关系，在较小程度上包括协调护理。无益的方面包括服务提供中的不一致。调查结果暗示了对服务提供的一些影响，包括需要以家庭为中心的方法。