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Oxford University Press, European Journal of Public Health, 5(24), p. 819-826

DOI: 10.1093/eurpub/cku026

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

Journal article published in 2014 by Lara Pivodic ORCID, Lieve Van den Block ORCID, Koen Pardon, Guido Miccinesi, Tomás Vega Alonso, Tomas Vega Alonso, Nicole Boffin, Gé A. Donker ORCID, Maurizio Cancian, Aurora López-Maside, Bregje D. Onwuteaka-Philipsen ORCID, Luc Deliens
This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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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