Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study

BMC Health Services Research

Eileen Courtney¹  Gemma Kiernan¹  Suzanne Guerin²  Karen Ryan³  Regina McQuillan³ 

[1] School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland;School of Psychology, University College Dublin, Dublin, Ireland;St Francis Hospice, Dublin, Ireland;

关键词: Life-limiting neurodevelopmental disability;    Children and families;    Services;    Delphi study;   

DOI  :  10.1186/s12913-020-05754-w

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY