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

Abstract

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.

Children with palliative care needs – the landscape of the nordic countries

“…In addition, systematic or scoping reviews aiming to summarize evidence and identify knowledge gaps have been conducted [3,21,[31][32][33][34]. Some studies exist regarding implementation and models of care interventions [35], aiming to support symptom management and family communication, and psychosocial support [36], and all countries have a research focus on homecare for children with palliative care needs [27,30]. To provide data and enable longitudinal registry-based studies, some registries exist, such as those in Denmark [37] and Sweden [38].…”