The Food-Related Moral Experiences of Children with Swallowing Difficulties: A Participatory Hermeneutic Ethnography

Background: Food is an essential need for everyone. It is a source of sustenance, an occasional indulgence, and a way to define oneself within a culture. Appropriate nutrition is considered a right for every child. Children’s experiences—including their food-related experiences—can shape their understandings of themselves and the world around them. Their experiences with food can affect the fulfillment of their nutritional and other eating-related needs. For this reason, it is important to understand how children with swallowing difficulties experience food as well as the factors that influence these food experiences. Sameroff's Transactional Model of Development, which emphasizes the role of environmental factors in a child’s development, sees psychological and social development as a dynamic process that results from the interaction between children and their environment. An important influence on children’s experiences is the child’s relational environment (e.g., between families/caregivers and children). Examining children’s relational environment can help advance understandings of children’s food-related experiences and help improve services for children with swallowing difficulties since little is known about these experiences. Research Purpose: To advance knowledge about food-related moral experiences of children with swallowing difficulties. Objectives: 1) To explore the food-related moral experiences of children with swallowing difficulties; 2) To analyze how interactions with families/caregivers affect these experiences. Methods: Participatory hermeneutic ethnography was used for this study. This methodology helps identify what is particularly meaningful for these children and other people within the study settings, as well as the local imaginaries and institutional norms, structures and practices. A six-month participatory hermeneutic ethnography was conducted in the city of Genoa and Milan in Northern Italy. The study settings included participants’ homes and schools, where these children usually have meals. Eight children with swallowing difficulties from 7 to 11 years old and their families participated in the study. The participatory approach within the chosen methodology promoted the involvement of children and their families, caregivers and healthcare professionals. Multiple data collection methods were used and integrated (e.g., participant observation, interviews, documents analysis). Data collection and interpretation were conducted simultaneously. A Childhood Ethics interpretive framework guided the analysis and interpretation of (a) moral experiences of children, (b) family and caregiver influences on these experiences, as well as (c) the social context of healthcare. Results: The results showed that food-related moral experiences of these children are strongly influenced by the context where they usually eat, including environment, time, space, people, food type and their specific swallowing difficulty. Also, these children need different levels of support during mealtimes that is provided mainly by family/caregivers and healthcare professionals or assistants that know these children very well. Children are mostly aware of their condition and the help they need and at the same time they have a strong will to be accepted and included in social activities with their peers. Implications: This study helped develop a better understanding of children with swallowing difficulties’ food-related moral experiences and the families/caregivers’ interactions related to these food-related moral experiences. This research contributed to advancing knowledge related to the food-related moral experiences of this population of children, and understanding of their real needs, which can inform the development of intervention improvements that they require. Also highlighted was the need for specialized healthcare professionals to care for these children within community and hospital settings.