‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study.

Tripodoro, Vilma A.; Veloso, Verónica I.; Víbora Martín, Eva; Kodba-Čeh, Hana; Bakan, Miša; Rasmussen, Birgit H.; Zambrano, Sofia C.; Joshi, Melanie; Hálfdánardóttir, Svandis Íris; Ásgeirsdóttir, Guðlaug Helga; Romarheim, Elisabeth; Haugen, Dagny Faksvåg; McGlinchey, Tamsin; Yildiz, Berivan; Barnestein-Fonseca, Pilar; Goossensen, Anne; Lunder, Urška; van der Heide, Agnes (2024). ‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study. Palliative care and social practice, 18 Sage 10.1177/26323524241260425

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Background:
Family is a crucial social institution in end-of-life care. Family caregivers are
encouraged to take on more responsibility at different times during the illness, providing
personal and medical care. Unpaid work can be overburdening, with women often spending
more time in care work than men.
Objectives:
This study explored multiple views on the family’s role in end-of-life care from
a critical perspective and a relational autonomy lens, considering gender in a socio-cultural
context and applying a relational autonomy framework. It explored patients, relatives and
healthcare providers’ points of view.
Design:
This qualitative study was part of the iLIVE project, involving patients with incurable
diseases, their relatives and health carers from hospital and non-hospital sites.
Methods:
Individual interviews of at least five patients, five relatives and five healthcare
providers in each of the 10 participating countries using a semi-structured interview guide
based on Giger–Davidhizar–Haff’s model for cultural assessment in end-of-life care. Thematic
analysis was performed initially within each country and across the complete dataset. Data
sources, including researchers’ field notes, were translated into English for international
collaborative analysis.
Results:
We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers).
After collaborative analysis, five themes were identified across the countries: family as a finite
care resource, families’ active role in decision-making, open communication with the family,
care burden and socio-cultural mandates. Families were crucial for providing informal care
during severe illness, often acting as the only resource. Patients acknowledged the strain
on carers, leading to a conceptual model highlighting socio-cultural influences, relational
autonomy, care burden and feminisation of care.
Conclusion:
Society, health teams and family systems still need to better support the role
of family caregivers described across countries. The model implies that family roles in
end-of-life care balance relational autonomy with socio-cultural values. Real-world endof-
life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an
interpersonal setting. Gender is often prominent, but normative ideas influence the decisions
and actions of all involved.

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