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Dublin Core
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00672-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Family experiences with palliative care for children at home: a systematic literature review
Publisher
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BMC Palliative Care
Date
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2020
Subject
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Child; Family; Family centred care; Home care; Life limiting condition; Life threatening condition; Parents; Pediatric palliative care; Ppc; Sibling
Creator
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Winger A; Kvarme LG; Løyland B; Kristiansen C; Helseth S; Ravn IH
Description
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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 life-threatening (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.
Identifier
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<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00672-4</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
BMC Palliative Care
Child
December 2020 List
Family
Family centred care
Helseth S
Home Care
Kristiansen C
Kvarme LG
Life limiting condition
Life threatening condition
Løyland B
Parents
Pediatric Palliative Care
Ppc
Ravn IH
Sibling
Winger A