Family experiences with palliative care for children at home: A systematic literature review
dc.contributor.author | Winger, Anette | |
dc.contributor.author | Kvarme, Lisbeth Gravdal | |
dc.contributor.author | Løyland, Borghild | |
dc.contributor.author | Kristiansen, Camilla | |
dc.contributor.author | Helseth, Sølvi | |
dc.contributor.author | Ravn, Ingrid Helen | |
dc.date.accessioned | 2020-10-27T10:13:35Z | |
dc.date.accessioned | 2020-10-28T09:56:05Z | |
dc.date.available | 2020-10-27T10:13:35Z | |
dc.date.available | 2020-10-28T09:56:05Z | |
dc.date.issued | 2020-10-24 | |
dc.identifier.citation | Winger, A., Kvarme, L.G., Løyland, B., Kristiansen, C., Helseth, S. & Ravn, I.H. (2020). Family experiences with palliative care for children at home: A systematic literature review. BMC Palliative Care, 165. https://doi.org/10.1186/s12904-020-00672-4 | en |
dc.identifier.issn | 1472-684X | |
dc.identifier.issn | 1472-684X | |
dc.identifier.uri | https://hdl.handle.net/10642/9131 | |
dc.description.abstract | Background: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child’s home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. Methods: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0–18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. Results: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and lifethreatening (LT) conditions receiving palliative care at home. In general, the children’s mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. Conclusions: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings. | en |
dc.language.iso | en | en |
dc.publisher | BioMed Central (BMC) | en |
dc.relation.ispartofseries | BMC Palliative Care;19, Article number: 165 (2020) | |
dc.rights | © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. | en |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | |
dc.subject | Pediatric palliative care | en |
dc.subject | Home care | en |
dc.subject | Children | en |
dc.subject | Families | en |
dc.subject | Life threatening conditions | en |
dc.subject | Siblings | en |
dc.subject | Parents | en |
dc.subject | Family centred care | en |
dc.subject | Life limiting conditions | en |
dc.title | Family experiences with palliative care for children at home: A systematic literature review | en |
dc.type | Journal article | en |
dc.type | Peer reviewed | en |
dc.date.updated | 2020-10-27T10:13:35Z | |
dc.description.version | publishedVersion | en |
dc.identifier.doi | https://dx.doi.org/10.1186/s12904-020-00672-4 | |
dc.identifier.cristin | 1842031 | |
dc.source.journal | BMC Palliative Care |
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Except where otherwise noted, this item's license is described as © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give
appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if
changes were made. The images or other third party material in this article are included in the article's Creative Commons
licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons
licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain
permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the
data made available in this article, unless otherwise stated in a credit line to the data.