Paediatric palliative care and intellectual disability—A unique context

Abstract

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. (PsycINFO Database Record (c) 2018 APA, all rights reserved)Paediatric Palliative Care Service, Children’s Health Queensland, South Brisbane, QLD, Australia. Other Publishers: Blackwell Publishing. Release Date: 20170828. Correction Date: 20181001. Publication Type: Journal (0100), Peer Reviewed Journal (0110). Format Covered: Electronic. Document Type: Journal Article. Language: EnglishMajor Descriptor: Palliative Care; Pediatrics; Quality of Life; Intellectual Development Disorder. Classification: Health & Mental Health Services (3370). Population: Human (10). Age Group: Childhood (birth-12 yrs) (100). Methodology: Empirical Study; Quantitative Study. References Available: Y. Page Count: 14. Issue Publication Date: Nov, 2017. Publication History: Accepted Date: Jul 14, 2017. Copyright Statement: John Wiley & Sons Ltd. 2017. <br />