Quality of life in long-term total parenteral nutrition patients and their family caregivers

Abstract

The purpose of this study was to identify individual and family variables associated with patient and caregiver quality of life. Perceived quality of life has been associated with improved outcomes and compliance. Methods included telephone interviews of 178 families, randomly selected from academic, hospital, and infusion agencies across the United States, with 116 follow-up questionnaires returned. Patients had varied bowel disorders requiring total parenteral nutrition for an average of 4.6 years. Patients were an average of 52.0 years old; caregivers averaged 52.5 years of age. Coded interview data indicated that caregivers assist patients daily (for a mean of 4.2 hours) and provide emotional support. Problems such as loss of friends, loss of employment, and depression were reported in two thirds of the families. Overall low quality of life was associated with length of time on total parenteral nutrition, fewer family coping skills, and inability to get along on income, whereas higher quality of life was associated with higher self-esteem and quality in the relationship. Preparing families for potential social problems or situations related to depression while also enhancing financial assistance, self-esteem, quality in the relationship, and coping skills may increase both patient and caregiver quality of life.