Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their fam
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(2020) 20:927
RESEARCH ARTICLE
Open Access
Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study Suzanne Guerin1* , Gemma Kiernan2, Eileen Courtney2, Regina McQuillan3 and Karen Ryan3
Abstract Background: 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. Methods: A 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. Results: Primary 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. Conclusions: The 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. Keywords: Life-limiting neurodevelopmental disability, Children and families, Services, Delphi study
Background Appropriate healthcare services are vital for the health and wellbeing of children with life-limiting neurodevelopmental disabilities (LLNDDs). LLNDDs include conditions where there are limitations in the functioning of the brain and/or neuromuscular system, encompassing congenital or acquired conditions, with a variety of neurological, genetic or metabolic aetiologies, that limit * Correspondence: [email protected] 1 School of Psychology, University College Dublin, Dublin, Ireland Full list of author information is available at the end of the article
the lifespan of the individual [1, 2]. While children in this group may not receive a formal diagnosis, common conditions include cystic fibrosis, muscular dystrophy, severe cerebral palsy, and chromosomal abnormalities [3]. Children with LLNDDS are generally cared for at home, though at times they may need hospital and hospice-based care. Complex medical regimes, dependence on technology and the alternation of medical crises and periods of relative stability necessitate that these children and their families have ongoing contact and
© The Author(s). 2020 Open Access This article is licensed under a Creat
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