{"title":"Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review.","authors":"Ashleen Crowe, Fiona Hurley, Gemma Kiernan, Helen Kerr, Yvonne Corcoran, Jayne Price, Joanne Reid, Eileen Courtney, Tracey McConnell, Patricia McNeilly, Veronica Lambert","doi":"10.1186/s12904-025-01661-1","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While 'home' is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate.</p><p><strong>Aim: </strong>To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions.</p><p><strong>Design: </strong>A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800.</p><p><strong>Data sources: </strong>CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool.</p><p><strong>Results: </strong>Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents' capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care.</p><p><strong>Conclusion: </strong>There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents' perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"24"},"PeriodicalIF":2.5000,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11773786/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMC Palliative Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s12904-025-01661-1","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
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Abstract
Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While 'home' is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate.
Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions.
Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800.
Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool.
Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents' capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care.
Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents' perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.
期刊介绍：
BMC Palliative Care is an open access journal publishing original peer-reviewed research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness.
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