To know is to (start to) understand: What's important to parents of children with temporary feeding tubes and where do they find their support?

Abstract

Background: Temporary feeding tubes, such as nasogastric tubes, are essential for providing nutrition to children who cannot sustain adequate oral intake. Despite their necessity, parents express apprehension about temporary feeding tube placement. This study explored parents' priorities and support sources for their child's temporary feeding tube. Methods: Parents of children with temporary feeding tubes participated in semi-structured interviews post-placement. They responded to questions about what was important to them, ("What are the things that are important to you and your child in this situation of having the feeding tube?") and their sources of support ("Where will you go to get support about your child's feeding tube?"). Inductive content analysis assessed response frequencies based on parent priorities and support sources. Results: Thirty-four parents were interviewed. The median time since temporary tube placement was 1 month (range 1-10 months). Six categories were derived regarding what was important to parents, with some parents providing answers across more than one category.Important things identified included; nutrition (n=22, 65%), tube position (n=6, 18%), child comfort (n=7, 21%), tube use for medication (n=2, 6%), weaning off the tube (n=2, 6%), and affirming the tube was the right decision (n=1, 3%). Sources of support included hospital clinicians (n=27, 79%), family (n=7, 21%), general practitioners (n=2, 6%), and Facebook (n=1, 3%). One parent reported having no support. Conclusion: This research begins to explore what parents of children with temporary feeding tubes consider important and identifies their support sources. The findings suggest that clinicians should give precedence to discussing nutrition, tube management, and the child’s comfort with parents and clarify the support options available for families. Acknowledgement: The authors would like to acknowledge Health Translation Queensland, which provided a microgrant to fund the input of health consumers in designing the questions for this study. Funding source: This research did not receive any funding, however a microgrant from Health Translation Queensland allowed for health consumers to be involved in this research study design. Conflict of interest: The authors declare that they have no conflicts of interest.