“The Kitchen is My Favrote Place in the House”: A World Worth Living in for Children with Feeding Difficulties and Their Families

Abstract

AbstractWe cannot live well without food. However, a significant number of children experience medical issues that impact their feeding, in some cases requiring feeding via a tube. The SUCCEED Child Feeding Alliance recognises the challenges that tube-feeding presents, and collaborates with parents, healthcare providers, and others to take steps towards a world in which all children who tube-feed thrive, experiencing the full joys of childhood, and agentically pursuing the futures of their own making. This chapter is inspired by Henry, who despite an ongoing need to tube-feed, has a passion for cooking, and wants to be a chef when he is older. We explore the challenges and praxis of tube-feeding, and different responsibilities and opportunities we have as adults in promoting positive change—from perspectives as parent, clinician, artist, and researcher. This dialogue is infused with theoretical insights from the theory of practice architectures, and Stetsenko’s transformative activist stance, which draws our attention to ways in which we contribute individually and collectively to the future that ought to be. We conclude by presenting one of Chef Henry’s own recipes.