Well-being of children with neurologic impairment after fundoplication and gastrojejunostomy tube feeding.

BACKGROUND: There is limited understanding on the impact of fundoplication or gastrojejunostomy tube (GJT) feeding in children with neurologic impairment who have swallowing dysfunction, gastroesophageal reflux disease, and/or dysmotility. OBJECTIVE: To explore and understand the well-being of families and their children with neurologic impairment who had either a fundoplication or GJT. METHODS: This was a qualitative study using in-depth, individual interviews with parents of children with severe neurologic impairment who had either a fundoplication with gastrostomy or GJT. Parents' perceptions of daily life and QoL were explored in the context of the interventions. Interviews were transcribed, and data were analyzed using qualitative content analysis. RESULTS: Children and their parents are profoundly impacted by the health condition of the children. QoL effects were similar across spheres of individual and family experience and well-being. Themes related to QoL were: physical health of the child and the future, intense caregiving needs, social isolation and stigma, pervasive impact on the family, financial strain, and the process of finding meaning. Fundoplication and GJT affected feeding tolerance and times, caregiving, and health care utilization. Parents identified how changes in these factors influenced child, parental, and family QoL. CONCLUSIONS: The diverse influences of the underlying condition and the interventions should be addressed in the delivery of health services. Future studies of the effectiveness of fundoplication and GJT feeding should address the well-being of the child and family, the impact on family caregiving, and health care utilization.