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- Title
Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study.
- Authors
Pivodic, Lara; Van den Block, Lieve; Pardon, Koen; Miccinesi, Guido; Vega Alonso, Tomás; Boffin, Nicole; Donker, Gé A.; Cancian, Maurizio; López-Maside, Aurora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc
- 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.
- Subjects
EUROPE; TERMINAL care; CHI-squared test; CONFIDENCE intervals; STATISTICAL correlation; FAMILIES; FISHER exact test; RESEARCH funding; MULTIPLE regression analysis; BURDEN of care; CROSS-sectional method; RETROSPECTIVE studies; DATA analysis software; DESCRIPTIVE statistics; ODDS ratio; ECONOMICS
- Publication
European Journal of Public Health, 2014, Vol 24, Issue 5, p819
- ISSN
1101-1262
- Publication type
Article
- DOI
10.1093/eurpub/cku026