Caregiver burden with complex patients in a home care program

Abstract

Objectives: To characterize caregiver burden in the care of dependent individuals in the home care program of the Descobertas Family Health Unit, to test the association between caregiver burden and the level of dependence of the patient, and to identify the dimensions of caregiver wellbeing that were affected. Study design: Observational study. Location: USF Descobertas. Population: Informal caregivers of dependent individuals in a home care program. Methods: Each informal caregiver of a dependent individual in the medical and nursing home care program was included in the study over a two-month period. We conducted interviews by telephone using three questionnaires: a social and demographic description of the caregivers, the Katz scale to evaluate the level of dependency of the patient, and the Zarit caregiver burden interview. Spearman coefficients and Kruskal-Wallis tests were used to test for associations between variables. Results: A total of 174 dependent patients were identified, 65 of whom fulfilled the inclusion criteria and who were cared for by 60 caregivers. Five caregivers were taking care of two dependents simultaneously. Regarding the Zarit scale, 44.6% (n=29) of the caregivers reported a heavy burden, 20.0% (n=13) a light burden and 35.4% (n=23) no burden. The mean value of the Katz scale was 2.78. There was no statistically significant correlation between caregiver burden and the level of dependency of the patient (p=0.053). Conclusion: The burden of caregiving was identified in the majority of informal caregivers and was reported to be at an intense level. The items identified on the Zarit Scale were similar to those found in other national studies. Healthcare professionals should perform a systematic evaluation of caregiver burden and be able to intervene when needed. Further study of this issue is required in larger populations.