Stories of mealtimes with a child who is tube-fed: An analysis of parent blog entries

Abstract

Eating, drinking and/or swallowing difficulties present in both typically developing children and children with developmental disorders. Eating and drinking may be very unpleasant or unsafe potentially requiring tube-feeding. The importance of mealtimes for typically developing children has been highlighted in health promotion literature (Harding, Wade, & Harrison, 2013). There are currently studies that have investigated mealtimes with children who more broadly have feeding difficulties and there is an indication that mealtimes are not as interactive and provide less opportunities to develop eating and drinking skills (Franklin & Rodger, 2003). (Bailey, Stoner, Angell, & Fetzer, 2008) highlight that lack of support has influenced families to self-educate in relation to their child's eating and drinking. Often professional advice provided to help parents improve mealtimes was not always considered adequate, particularly within large multidisciplinary teams. Furthermore, although investigators have provided previous research looking at the experiences of families with children who are tube-fed, the unique mealtime experience has not been investigated in detail. Our study particularly wanted to capture the parent's voice. Aim(s): We investigated parents experiences and perceptions around mealtimes for families who have a child who is tube-fed. This may support professionals working with children who are tube-fed to have a greater understanding of the nature of mealtimes within this population. Method: We used thematic analysis to capture themes that arose within blog entries written by parents who have a child who is tube-fed. Blog entries from 30 families were included in this pilot study (Hookway, 2012). Result(s): Two overarching themes and five subthemes were identified. The first theme was "Creating opportunities for our children" which had three sub themes (1) Mealtime and feeding routines, (2) Expectations and (3) Eating real food. The second theme was "Finding our place in the community" which had two sub themes: (1) Feeling the stigma, and (2) Changing perspectives. Conclusion: This study captured how these parents face the task of thinking about and actively creating ways that they can improve and adapt what they do, to create a more positive environment for their child who is tube-fed.