Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

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Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children’s bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children’s end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the “Home-Based Pediatric End-of-Life Care Model for Children with Cancer.” Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our “Home-Based Pediatric End-of-Life Care Model for Children with Cancer” offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

OriginalsprogEngelsk
TidsskriftPalliative Medicine
Vol/bind37
Udgave nummer1
Sider (fra-til)149-162
Antal sider14
ISSN0269-2163
DOI
StatusUdgivet - 2023

Bibliografisk note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Danish Cancer Society [grant number R173-A11326-17-S51]; the Health Foundation [grant number 19-B-0045]; Axel Muusfeldts Fund [grant number 2019-0137]; Dagmar Marshalls Foundation [grant number 500020]; and Tømrermester Jørgen Holm og Hustru Elisa f. Hansens Mindelegat [grant number 21110].

Funding Information:
We would like to extend our gratitude to all the participating families and professionals for sharing their experiences with us. This work is part of Childhood Oncology Network Targeting Research, Organisation & Life expectancy (CONTROL). The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Danish Cancer Society [grant number R173-A11326-17-S51]; the Health Foundation [grant number 19-B-0045]; Axel Muusfeldts Fund [grant number 2019-0137]; Dagmar Marshalls Foundation [grant number 500020]; and Tømrermester Jørgen Holm og Hustru Elisa f. Hansens Mindelegat [grant number 21110].

Publisher Copyright:
© The Author(s) 2022.

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