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

作者:Pivodic Lara*; Van den Block Lieve; Pardon Koen; Miccinesi Guido; Alonso Tomas Vega; Boffin Nicole; Donker Ge A; Cancian Maurizio; Lopez Maside Aurora; Onwuteaka Philipsen Bregje D; Deliens Luc
来源:The European Journal of Public Health, 2014, 24(5): 819-826.
DOI:10.1093/eurpub/cku026

摘要

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 %26lt; 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P %26lt; 0.001). Patients %26lt; 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.

  • 出版日期2014-10