Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

Abstract

Background: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent-child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently.Methods: Fourteen parents were interviewed using semi-structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision-making process to undertaking an intensive multidisciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes.Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat-if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents.Conclusions: Parenting a tube-fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support.