An observational study of family caregivers' quality of life caring for patients with a stoma.

The management of stomas following surgical resection often falls to family caregivers. The purpose of this observational survey was to investigate the family caregivers' quality of life caring for a patient with ostomy. Between August 2008 and July 2009, 144 eligible Italian family members caring for a patient with ostomy were evaluated using two questionnaires: the Caregiver Quality of Life Cancer survey and the Caregiver Burden Inventory. Both questionnaires have similar capabilities to explore the burden of caregiving. The Caregiver Quality of Life Cancer reported a total Quality of Life score of 97.11 (SD = 14.36), whereas the Caregiver Burden Inventory score for the sample was 51.95 (SD = 10.72). Variables of interest included health, self-perception, nationality, society and territory in which the person lives, education, job, standard of living, house, family, relations with partner, and friendship. Only those who provided complete data (n = 123) were included in the analyses. Data show that generally the family caregiver is married (92%), female (97%), and aged 55.15 years (SD = 16.5). The burden of assistance is higher in younger single caregivers, whereas those with children or who are aged have economic concerns. Loss of spirituality is reported in people aged 30-49 and 71-90 years. Family Caregivers' Quality of Life is poor. Further research is needed to determine the effectiveness of social and economic interventions to help family caregivers in the management of long-term assistance.