Social Issues Related to Pediatric Home Enteral Nutrition

Abstract

LEARNING OUTCOME: To recognize that social problems encountered by caregivers of children on home enteral nutrition are prevalent and require the attention of dietitians. Home enteral nutrition (HEN) provides long-term nutritional support to patients who have difficulty consuming appropriate kilocalories, but otherwise do not require hospital care. The majority of HEN research does not address the social problems that the HEN patient or caregiver experiences. The purpose of this study was to determine the frequency and difficulty of medical and social problems encountered by caregivers of pediatric HEN patients. Caregivers were asked to rate, on a seven point Likert scale, twenty problems (ten medical and ten social) associated with HEN according to frequency of occurrence and difficulty in management. One hundred fifty caregivers were mailed a survey that was validated and had reliability coefficients of α= .84 for frequency and α = .87 for difficulty responses. Thirty-seven (25%) caregivers responded to the survey. Problems were ranked from one to twenty according to the mean cross product scores (frequency x difficulty). The mean frequencies and difficulties for the social and medical problems were analyzed by a Paired t-Test. To determine the overall burden of medical and social management, the mean Medical Total Composite Score (MTCS) and the mean Social Total Composite Score (STCS) were also analyzed by the Paired t-Test. Of the top-ten problems reported, seven were classified as social while three were medical. Caregivers reported social problems were more frequent (p<0.003) and more difficult (p<0.001) than medical problems. The STCS was significantly higher than the MTCS (p<0.000). Caregivers were burdened more by social problems than medical problems, as indicated by the high ratings for frequencies and difficulties of social problems. As the number of medical and/or social problems increased, the difficulty in coping with all the problems increased. Dietitians need to recognize the severity of the social problems associated with children prescribed HEN in order to aid the caregiver in managing the daily social burdens of caring for a child on HEN.