Exploring service use and preferences of care for children with life-limiting neurodevelopmental conditions and their families : a mixed methods study

Abstract

A mixed methodological approach facilitated an in-depth examination of the service experiences, service preferences and financial costs associated with caring for children with life-limiting neurodevelopmental conditions at home in Ireland. A qualitative study using Interpretative Phenomenological Analysis (IPA) examined parents’ lived experiences of caring for and using services in relation to their child. The IPA findings revealed the overwhelming nature of parents’ experiences and needs around 8 major themes: (1) transitioning from hospital to home, (2) the perpetual wait for services, (3) the crucial role of liaison nurse (4) parents as advocates, (5) physiotherapy - a highly valued service (6) the financial costs of caring, (7) emotional effects of caring and (8) future concerns.