Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Oct 24;19(1):165.
doi: 10.1186/s12904-020-00672-4.

Family experiences with palliative care for children at home: a systematic literature review

Anette Winger  1 , Lisbeth Gravdal Kvarme  2 , Borghild Løyland  2 , Camilla Kristiansen  3 , Sølvi Helseth  2 , Ingrid H Ravn  2
Affiliations

Family experiences with palliative care for children at home: a systematic literature review

Anette Winger et al. BMC Palliat Care. .

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 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.

Keywords: Child; Family; Family centred care; Home care; Life limiting condition; Life threatening condition; PPC; Parents; Pediatric palliative care; Sibling.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Flowchart
See this image and copyright information in PMC

References

    1. Connor SR, Downing J, Marston J. Estimating the global need for palliative Care for Children: a cross-sectional analysis. J Pain Symptom Manag. 2017;53(2):171–177. doi: 10.1016/j.jpainsymman.2016.08.020. - DOI - PubMed
    1. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–e929. doi: 10.1542/peds.2011-2846. - DOI - PubMed
    1. Meghani SH. A concept analysis of palliative care in the United States. J Adv Nurs. 2004;46(2):152–161. doi: 10.1111/j.1365-2648.2003.02975.x. - DOI - PubMed
    1. Definition of Palliative Care . Worlds Health Organization. 1998.
    1. Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, Wolfe J. Symptoms and suffering at the end of life in children with cancer: An Australian perspective. Med J Australia. 2010;192(2):71–75. doi: 10.5694/j.1326-5377.2010.tb03420.x. - DOI - PubMed

Publication types