Dietary care and familialisation of children with Prader-Willi syndrome

Abstract

Prader-Willi syndrome (PWS), a neurodevelopmental disorder, features the early onset of eating problems and their progression from anorexia to hyperphagia. This specific trajectory disrupts traditional nurturing patterns, requiring families and caregivers to adjust their approaches to manage these paradoxical behaviours. The interdisciplinarity literature (medical and social sciences) shows that knowledge of eating practices is based on a nutritional approach and focuses on managing hyperphagia.

An interdisciplinary research initiative broadens our comprehension of PWS by investigating the process of food socialisation within the interconnected contexts of the child and their family. The study, involving 13 families with children who have PWS, utilized a food ethnography approach in two phases. The first phase included individual interviews with 47 family members in their home environments, observing food preparation and meals. The second phase involved observing family mealtimes on a research platform and conducting interviews with all present family members.

The findings of this research highlight how the dynamics of this condition shape the necessity to anticipate and manage hyperphagia. The appearance of hyperphagic behaviour becomes a tipping point, both expected and feared by parents. It partially obscures the early stages of food socialisation. Thereafter, food control is achieved through rules applied on a daily basis, which are themselves determined by the narrower or broader physical and social contexts. These observations we identified four types of parental food control - Controlling, Transposing, Accommodating, and Innovating - corresponding to distinct physical and social contexts. The styles vary in terms of the intensity of control and family involvement, ranging from strict practices to more flexible and innovative approaches. Thus, the study shows how recommendations made by care teams are interpreted by families, how they are implemented on a daily basis surrounding food management, and the consequences for the food socialisation of children.