Exploring the palliative care needs and delivery of services to young children with life-limiting neurodevelopmental disabiliies and their families: a mixed methods study
Courtney, Eileen (2012) Exploring the palliative care needs and delivery of services to young children with life-limiting neurodevelopmental disabiliies and their families: a mixed methods study. PhD thesis, Dublin City University.
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Children with life-limiting neurodevelopmental disabilities are a small but unique and important group within the paediatric population. While current policy discussions acknowledge that children with developmental disabilities are a heterogeneous group, policy prescriptions and legislation are aimed at the group as a whole which may not account for the exceptional needs of these children and their families. As a diagnostic group children with complex disabilities were identified as potentially benefiting from a comprehensive palliative care service, particularly where the child’s condition involves susceptibility to health complications and the likelihood of premature death. Despite this there is relatively little known about the morbidity experienced by this particular group of children and their families, or how well current services meet their needs.
This mixed methods study explored the palliative care needs of young children with lifelimiting neurodevelopmental disabilities and their families and the services that are currently available to them. A sequential explanatory mixed methods design was used to explore families experiences of providing care and engaging with services. Families participated in a postal survey (n=63) and interviews (n=12). A Delphi design, consisting of three individual interviews and a panel of 13 service providers, explored expert opinion on current services and the changes required to improve service delivery to this population of children and their families.
The findings suggest that although the children experience considerable morbidity associated with their condition, access to specialist palliative care services is not routinely required, and this group of children may be better served by improving access and frequency of the mainstream services that are currently available. The morbidity experienced by the family rivals that experienced by the child, yet families suggest that this is under acknowledged and that their engagement with services often acts to exacerbate rather than ameliorate the stress they experience. Both parents and service providers identify that current services are underresourced and insufficient to meet the needs of this population of children. However, they do not agree issues related to how services currently function, or on the factors that would best act to improve these services.
The need to amend current practice in order to better meet the needs of this population of children and their families is evident in the findings of this study. The amendments required relate to several aspects of current practice including greater support for families caring for young children with life-limiting neurodevelopmental disabilities, improving the process of service delivery, and improving the services themselves.
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