Paediatric Palliative Care And Intellectual Disability-a Unique Context

Paediatric Palliative Care And Intellectual Disability-a Unique Context

Duc J K; Herbert A; Heussler H S

Journal Of Applied Research In Intellectual Disabilities

2017

Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life

BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.

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October 2017 List