• Serge Dumont, Jean Turgeon, Pierre Allard, Pierre Gagnon, Cécile Charbonneau, and Lucie Vézina.
• Ecole de service social, Université Laval, Centre de recherche en cancérologie, Université Laval, Québec, Canada. Serge.Dumont@svs.ulaval.ca
• J Palliat Med. 2006 Aug 1;9(4):912-21.

BackgroundFamily caregivers caring for a patient with terminal cancer may experience significant psychological distress.ObjectiveThe purpose of this study was to determine the extent to which the family caregivers' psychological distress is influenced by the patients' performance status while taking into account individual characteristics of caregivers and their unmet needs.MethodsTwo hundred twelve family caregivers were assigned to three cohorts according to the patient's performance status, as measured by the Eastern Collaborative Oncology Group Functional Scale (ECOGS). Interview information was collected on the services and care provided, as well as on the caregivers' characteristics and level of psychological distress.ResultsFamily caregivers' psychosocial distress is strongly associated with the patients' terminal disease progress and declined functioning. The level of psychological distress varies from 25.2 to 33.5 (p = 0.0008) between the groups. Moreover, the percentage of caregivers with a high level of psychological distress varies from 41% to 62%, while this percentage is estimated at 19.2% in general population. A high distress index was significantly associated with the caregiver's burden, the patient's young age, the patient's symptoms, the caregiver's young age and gender, a poor perception of his/her health and dissatisfaction with emotional and tangible support.ConclusionsFamily caregivers of patients in the advanced stages of cancer experience a high level of psychological distress, which increases significantly as the patient loses autonomy. Health care policies and programs need to be revisited in order to take the reality of these patients and their families into account.

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