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End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences
Rigshosp, Copenhagen Univ Hosp, Dept Pediat & Adolescent Med, Blegdamsvej 9, DK-2100 Copenhagen, Denmark.;Univ Copenhagen, Copenhagen, Denmark.;Lund Univ, Dept Hlth Sci, Lund, Sweden..ORCID iD: 0000-0002-6911-3121
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jonkoping Univ, Child Res Grp, Dept Nursing Sci, Sch Hlth Sci, Jonkoping, Sweden..ORCID iD: 0000-0001-6419-2417
Univ N Carolina, Sch Nursing, Chapel Hill, NC USA..
Univ Southern Denmark, Danish Knowledge Ctr Rehabil & Palliat Care REHPA, Odense Univ Hosp, Nyborg, Denmark..
2022 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Epub ahead of print
Abstract [en]

Background There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

Place, publisher, year, edition, pages
John Wiley & Sons, 2022.
Keywords [en]
adolescent, child, home care services, infant, neoplasms, palliative care, parents, preschool, qualitative research, terminal care
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-55790DOI: 10.1111/scs.13066ISI: 000745977900001PubMedID: 35072276Scopus ID: 2-s2.0-85123433651Local ID: HOA;intsam;793846OAI: oai:DiVA.org:hj-55790DiVA, id: diva2:1634715
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Novo NordiskAvailable from: 2022-02-03 Created: 2022-02-03 Last updated: 2022-02-03

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Björk, Maria

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