Abstract
BackgroundThe aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.MethodsA Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.ResultsPrimary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.ConclusionsThe findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Highlights
The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services
Appropriate healthcare services are vital for the health and wellbeing of children with life-limiting neurodevelopmental disabilities (LLNDDs)
Recognizing the multiple specialisms that contribute to care for children with LLNDDs and their families, this Delphi study draws on experts from general pediatric services, intellectual disabilities and palliative care
Summary
The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. Bergstraesser et al [8] explored the perceptions and needs of pediatric healthcare professionals in Switzerland, including physicians, nurses, and associated healthcare professionals providing care to children with palliative care needs, at the end of life. They recommended specialized pediatric palliative care teams and identified the importance of training for healthcare professionals on issues such as symptom management, quality of life and providing comfort. Highlighted was the need to provide direct support for families during and beyond the illness of their child, coordination of care, interdisciplinary co-operation and the funding for services
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