Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Grunfeld, Eva; Coyle, Doug; Whelan, Timothy; Clinch, Jennifer; Reyno, Leonard; Earle, Craig C.; Willan, Andrew; Viola, Raymond; Coristine, Marjorie; Janz, Teresa; Glossop, Robert
June 2004
CMAJ: Canadian Medical Association Journal;6/8/2004, Vol. 170 Issue 12, p1795
Academic Journal
Background: The vital role played by family caregivers in sup-porting dying cancer patients is well recognized, but the bur-den and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed un-til their death or study completion at 3 years. Patients identi-fied a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Out-comes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the pal-liative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤50). Results: Over half of the caregivers were male (55%) and the pa-tient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean phys-ical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3--20.0); there were similar mean mental functioning scores (46.6 and 47.1 re-spectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were de-pressed (30% v. 9%, p= 0.02) and had a higher level of per-ceived burden (26.2 v. 19.4, p = 0.02) at the start of the ter-minal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depres-sion. Of employed caregivers, 69% reported some...


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