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

Autor: Tripodoro VA; Instituto Pallium Latinoamérica, Bonpland 2287, Ciudad de Buenos Aires (1425), Argentina.; Instituto de Investigaciones Médicas Alfredo Lanari, Universidad de Buenos Aires, Ciudad de Buenos Aires, Argentina.; ATLANTES Global Observatory of Palliative Care, University of Navarra, Pamplona, Navarra, Spain., Veloso VI; Instituto Pallium Latinoamérica, Buenos Aires, Ciudad de Buenos Aires, Argentina.; Instituto de Investigaciones Médicas Alfredo Lanari, Universidad de Buenos Aires, Ciudad de Buenos Aires, Argentina., Víbora Martín E; Fundación Cudeca, Malaga, Spain., Kodba-Čeh H; University Clinic of Pulmonary and Allergic Diseases Golnik, Research Department, Golnik, Slovenia., Bakan M; University Clinic of Pulmonary and Allergic Diseases Golnik, Research Department, Golnik, Slovenia., Rasmussen BH; Institute for Palliative Care, Lund University and Region Skåne, Sweden.; Department of Health Sciences, Lund University, Sweden., Zambrano SC; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; University Centre for Palliative Care, Inselspital, Bern University Hospital, Bern, Switzerland., Joshi M; Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany., Hálfdánardóttir SÍ; Palliative Care Unit, Landspitali - The National University Hospital of Iceland, Reykjavik Iceland., Ásgeirsdóttir GH; Palliative Care Unit, Landspitali - The National University Hospital of Iceland, Reykjavik Iceland., Romarheim E; Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway., Haugen DF; Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway.; Department of Clinical Medicine K1, University of Bergen, Bergen, Norway., McGlinchey T; Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK., Yildiz B; Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands., Barnestein-Fonseca P; Fundación Cudeca, Malaga, Spain.; Instituto IBIMA - Plataforma Bionand, Málaga, Spain., Goossensen A; University of Humanistic Studies, Utrecht, The Netherlands., Lunder U; University Clinic of Pulmonary and Allergic Diseases Golnik, Research Department, Golnik, Slovenia., van der Heide A; Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
Jazyk: angličtina
Zdroj: Palliative care and social practice [Palliat Care Soc Pract] 2024 Aug 01; Vol. 18, pp. 26323524241260425. Date of Electronic Publication: 2024 Aug 01 (Print Publication: 2024).
DOI: 10.1177/26323524241260425
Abstrakt: 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 end-of-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.
Competing Interests: The authors declare that there is no conflict of interest.
(© The Author(s), 2024.)
Databáze: MEDLINE
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