1. Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study.
- Author
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Pivodic L, Van den Block L, Pardon K, Miccinesi G, Vega Alonso T, Boffin N, Donker GA, Cancian M, López-Maside A, Onwuteaka-Philipsen BD, and Deliens L
- Subjects
- Accidents, Home economics, Accidents, Home psychology, Accidents, Home statistics & numerical data, Adolescent, Adult, Aged, Aged, 80 and over, Belgium epidemiology, Caregivers economics, Caregivers psychology, Family psychology, Female, General Practitioners, Health Care Surveys methods, Health Care Surveys statistics & numerical data, Humans, Italy epidemiology, Male, Middle Aged, Netherlands epidemiology, Retrospective Studies, Spain epidemiology, Stress, Psychological psychology, Terminal Care methods, Young Adult, Caregivers statistics & numerical data, Cost of Illness, Stress, Physiological, Stress, Psychological epidemiology, Terminal Care economics, Terminal Care psychology
- 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., (© The Author 2014. Published by Oxford University Press on behalf of the European Public Health Association.)
- Published
- 2014
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