Children's unmet palliative care needs: a scoping review of parents' perspectives
AffiliationUniversity of Bedfordshire
paediatric palliative care
advance care planning
B701 Palliative Care Nursing
MetadataShow full item record
AbstractBackground: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. Aim: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. Eligibility criteria: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. Charting methods: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. Sources of evidence: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. Results: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. Conclusions: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
CitationConstantinou G, Garcia R, Cook E, Randhawa G (2019) 'Children's unmet palliative care needs: a scoping review of parents' perspectives', BMJ Supportive and Palliative Care, 9, pp.439-450.
PublisherBMJ Publishing Group
- Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol.
- Authors: Ekberg S, Bradford N, Herbert A, Danby S, Yates P
- Issue date: 2015 Nov
- Family experiences with palliative care in freestanding paediatric hospices: a scoping review.
- Authors: Dorman J, Raffin Bouchal S, daSilva Curiel K, Miller M
- Issue date: 2022 Jun 1
- [Evaluation of Specialised Paediatric Palliative Home Care in Lower Saxony, Germany - A Qualitative Study on Parents' Perspectives].
- Authors: Kremeike K, Mohr A, Nachtmann J, Reinhardt D, Geraedts M, Sander A
- Issue date: 2016 May
- The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.
- Authors: Gill FJ, Hashem Z, Stegmann R, Aoun SM
- Issue date: 2021 Jan
- Family experiences with palliative care for children at home: a systematic literature review.
- Authors: Winger A, Kvarme LG, Løyland B, Kristiansen C, Helseth S, Ravn IH
- Issue date: 2020 Oct 24