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

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  • Lara Pivodic
  • Lieve Van Den Block
  • Koen Pardon
  • Guido Miccinesi
  • Tomás Vega Alonso
  • Nicole Boffin
  • Gé A. Donker
  • Maurizio Cancian
  • Aurora López-Maside
  • Bregje D. Onwuteaka-Philipsen
  • Luc Deliens
  • De Groote Zeger
  • Caraceni Augusto
  • Cohen Joachim
  • Francke Anneke
  • Harding Richard
  • J. Higginson Irene
  • Kaasa Stein
  • Linden Karen
  • Pasman Roeline
  • Pautex Sophie
<mark>Journal publication date</mark>1/10/2014
<mark>Journal</mark>European Journal of Public Health
Issue number5
Number of pages8
Pages (from-to)819-826
Publication StatusPublished
Early online date17/03/14
<mark>Original language</mark>English


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.