Burden on family carers and care-related financial strain at the end of life:A cross-national population-based study

Pivodic, Lara and Van Den Block, Lieve and Pardon, Koen and Miccinesi, Guido and Alonso, Tomás Vega and Boffin, Nicole and Donker, Gé A. and Cancian, Maurizio and López-Maside, Aurora and Onwuteaka-Philipsen, Bregje D. and Deliens, Luc and Zeger, De Groote and Brearley, Sarah and Augusto, Caraceni and Joachim, Cohen and Anneke, Francke and Richard, Harding and Higginson Irene, J. and Stein, Kaasa and Karen, Linden and Roeline, Pasman and Sophie, Pautex and Payne, Sheila (2014) Burden on family carers and care-related financial strain at the end of life:A cross-national population-based study. European Journal of Public Health, 24 (5). pp. 819-826. ISSN 1101-1262

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Abstract

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

Item Type:
Journal Article
Journal or Publication Title:
European Journal of Public Health
Uncontrolled Keywords:
/dk/atira/pure/subjectarea/asjc/2700/2739
Subjects:
ID Code:
134864
Deposited By:
Deposited On:
22 Jun 2019 09:20
Refereed?:
Yes
Published?:
Published
Last Modified:
17 Jun 2020 07:14