TY - JOUR

T1 - The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer

T2 - A qualitative secondary data analysis

AU - Hammer, Nanna Maria

AU - Bidstrup, Pernille Envold

AU - Olsen, Marianne

AU - Hansson, Helena

AU - Abitz, Maja

AU - Larsen, Hanne Bækgaard

N1 - Publisher Copyright: © 2024 The Author(s). Published with license by Taylor & Francis Group, LLC.

PY - 2024

Y1 - 2024

N2 - 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.

AB - 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.

U2 - 10.1080/07481187.2024.2355252

DO - 10.1080/07481187.2024.2355252

M3 - Journal article

C2 - 38822452

AN - SCOPUS:85194932388

JO - Death Studies

JF - Death Studies

SN - 0748-1187

ER -