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

Title

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

Creator

Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M

Publisher

Palliative Medicine

Date

2023

Subject

Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care

Description

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.

Rights

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Citation List Month

2023 SE3 - Oncology

Citation

Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M, “Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences,” Pediatric Palliative Care Library, accessed May 23, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19403.