Background The number of children and young people (CYP) living with life-limiting and life-threatening conditions is rising. Paediatric palliative care is a relatively new aspect of healthcare, the delivery of which is variable, with a wide range of healthcare and voluntary sector providers involved. Policy recommendations are for Specialist Paediatric Palliative Care (SPPC) services to be supported by a physician with specialist training.
Aim To examine the research evidence regarding the distinct benefits of SPPC services, with ‘Specialist Paediatric Palliative Care’ defined as palliative care services supported by a specialist physician.
Method Systematic review of studies of SPPC services published in English from 1980 to 2016. Keyword searches were carried out in medical databases (Cochrane, PubMed, EMBASE, CINAHL and AMED) and a narrative synthesis.
Results Eight studies were identified, most of which were retrospective surveys undertaken within single institutions; three were surveys of bereaved parents and three were medical notes reviews. Together they represented a heterogeneous body of low-level evidence. Cross-cutting themes suggest that SPPC services improve the quality of life and symptom control and can impact positively on place of care and family support.
Conclusions Current evidence indicates that SPPC services contribute beneficially to the care and experience of CYP and their families, but is limited in terms of quantity, methodological rigour and generalisability. Further research is necessary given the significant workforce and resource implications associated with policy recommendations about the future provision of SPPC and to address the need for evidence to inform the design and delivery of SPPC services.
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Contributors SM and JD designed the study. SM, AM and KB retrieved and analysed the data and drafted the article. AM and KB undertook these elements of the review to fulfil the requirements of the Selected Student Component 2 module of the MBChB course at Warwick University. JD assisted with interpretation of the data. LS and JD revised the article critically for clarity and intellectual content. All authors have approved this version for submission. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Funding SM is funded by a National Institute for Health Research Doctoral Research Fellowship (DRF-2014-07-065).
Disclaimer This article presents independent research funded in part by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR or the Department of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement A systematic review protocol has been published on PROSPERO (ref no: CRD42016050677).
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