A QUALITATIVE EXAMINATION OF FAMILIES’ EXPERIENCES OF TUBEFEEDING CHILDREN WITH GASTROSTOMY TUBES WHILE IN COMMUNITY ENVIRONMENTS

Abstract

The purpose of this study was to examine the psychological and social experiences of families feeding their child with a gastrostomy tube (GT) in public and community settings. Ten caregivers were interviewed whose children with a GT ranged from 11 months to 16 years in age. Caregivers’ accounts of their experiences tended to revolve around three primary groups of people contributing to their community feeding experiences: (1) nuclear family; (2) extended family; and (3) community members. Each of these three domains had several sub themes. While there were some caregivers who described positive experiences in most of the themes across each domain, there were no caregivers who shared only positive or neutral experiences. Even those who described positive experiences of the primary family accepting the GT (theme: caregiver self-efficacy) still reported having negative social perceptions of GT feeding in the community (theme: social perceptions). This suggests that despite stating they are accepting of the GT families may still hold reservations surrounding GT feeding in the community. Critical themes that can be easily addressed and prevented for families new to GT feedings include avoiding themes of self-imposed isolation and normalizing extended family in the GT feeding process.