FAMILY CAREGIVERS' QUALITY OF LIFE OF PATIENTS WITH STOMA, OBSERVATIONAL STUDY

Abstract 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.