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Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.ORCID iD: 0000-0002-8185-781x
Göteborgs universitet.
Göteborgs universitet; Sahlgrenska Universitetssjukhuset.
Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.ORCID iD: 0000-0003-4736-500X
2022 (English)In: Children, E-ISSN 2227-9067, Vol. 9, no 5, article id 641Article in journal (Refereed) Published
Abstract [en]

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

Place, publisher, year, edition, pages
2022. Vol. 9, no 5, article id 641
Keywords [en]
Bereavement, Communication, Emotions, Palliative care, Siblings
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-9593DOI: 10.3390/children9050641ISI: 000801292000001PubMedID: 35626818OAI: oai:DiVA.org:esh-9593DiVA, id: diva2:1667228
Available from: 2022-06-10 Created: 2022-06-10 Last updated: 2023-10-05Bibliographically approved

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Kreicbergs, UlrikaLövgren, Malin

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