The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis

Title

The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis

Creator

Hammer NM; Bidstrup PE; Olsen M; Hansson H; Abitz M; Larsen HB

Publisher

Death Studies

Date

2024

Subject

Terminal Care; Statistics as Topic

Description

While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.

Citation List Month

2025 SE1 - Oncology

Citation

Hammer NM; Bidstrup PE; Olsen M; Hansson H; Abitz M; Larsen HB, “The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis,” Pediatric Palliative Care Library, accessed April 22, 2025, https://pedpalascnetlibrary.omeka.net/items/show/20025.