Cohesion, flexibility, symptom distress, and coping in hospice home care families with cancer

Abstract

The purpose of this study was to describe the hospice caregiving family's response to the terminal illness of a family member. The conceptual framework for this study was adapted from McCubbin and McCubbin's Resiliency Model of Family Adjustment and Adaptation. A convenience sample of 30 families represented by two principal caregivers was evaluated at two data collection intervals: one week and four weeks after hospice admission. The setting was in the homes of families who were accepted for care by either of two hospice home care "· programs. A descriptive longitudinal design was used to examine the psychosocial fumily variables of family cohesion, family flexibility, and family coping. The relationship between patient symptom distress and caregiver perceived symptom distress was also· examined. Hospice involvement, as operationalized by number of visits, was investigated for each family at both intervals. Poor intraclass correlations between the two caregivers showed that the FCOPES instrument did not provide a reliable measure of the caregiving family unit; therefore, coping strategies were not analyzed. While no significant changes over time were noted for either family cohesion or family flexibility, families that fell in the outer range of the distribution and were isolated from other familie~ had lower cohesion and flexibility scores at both intervals. These outlier families responded with a greater amount of disagreement between family caregivers than did those in the remaining study sample. Caregiver perceived symptom distress was closely correlated to the patient symptom distress scale at both intervals. The caregiver's perception of the symptom distress was a good indicator of the patient's actual symptom distress. The number of visits by hospice personnel was not related to patient symptom distress or to family cohesion or flexibility.