Parental and professional perceptions of problems associated with long-term pediatric home tube feeding

We surveyed 24 caregivers of children fed by gastrostomy tube to identify day-to-day problems encountered in home enteral nutrition. In a second survey, 21 respondents cross-validated the problem list by rating how often they experienced each problem and how difficult each problem was to manage. Problems related to social functioning, recreational activities, and family functioning were rated by caregivers as the most frequent and difficult. We asked 11 pediatric feeding specialists to rate the same problems based on their perceptions of the frequency and severity of problems experienced by caregivers. Moderate agreement was found between professional and caregiver ratings, although professionals generally rated problems as more common and difficult than did the caregivers. Additionally, positive relationships were found between caregiver ratings of common gastrostomy-tube problems and general levels of stress in the home. Data suggest that problems identified by caregivers as most common and difficult are often in the social rather than the medical realm. A broadly based family assessment that focuses on medical and social aspects of home enteral nutrition may maximize nutritional benefits for the patient as well as improve general family functioning and reduce stress in the home.