Care demands, distress, and psychological well-being of family caregivers of persons with advanced cancer living in the home

This is a descriptive correlational study designed to examine family caregivers' perceptions of care demands of persons with advanced cancer living in the home setting, perceptions of distress in relation to these demands, and the caregivers' psychological well-being. In addition, the relationships among these variables were explored. The Lazarus and Folkman (1984) theory of stress, appraisal, and coping guided this study. A convenience sample of 40 family caregivers who were providing care in the home to a relative with advanced cancer completed the Caregiver (Stressor) Inventory, a revised Maslach Burnout Inventory, and a participant information sheet. Overall, the majority of cancer patients in this study were minimally dependent on their caregiver. A small proportion required moderate assistance with various care demands and no cancer patients were totally dependent on their caregiver. The type of assistance that was required was reflective of the patients' physical, psychological, and illness treatments needs. The majority of family caregivers experienced mild perceptions of distress in relation to various patient care demands. A small proportion experienced no distress. The overall demand for patient care was significantly related to caregivers' perceptions of distress (rho=.51). The outcomes of caregiving were examined in relation to emotional exhaustion, depersonalization, and personal accomplishment which are manifestations of burnout. Approximately half the family caregivers were found to experience moderate to high levels of emotional exhaustion and/or low levels of personal accomplishment, and a small proportion experienced feelings of depersonalization. Significant positive relationships were found between caregivers' overall perceptions of distress and the manifestation of emotional exhaustion and depersonalization but not to personal accomplishment. The components of burnout were not related to the overall demand for patient care. This finding suggests that caregivers' subjective appraisal of distress had a greater impact on caregivers' psychological well-being than did the actual hands—on demand to provide patient care. The findings of this study were discussed in relation to parallel research studies, methodological limitations, and the theoretical framework. As well, implications for nursing practice, theory and education, and recommendations for future research were identified.Applied Science, Faculty ofNursing, School ofGraduat