Challenges in dietary management: a qualitative study on caregivers of preschool and school-age children with citrin deficiency

Reasonable dietary management is the most important and effective treatment for citrin deficiency. However, as this is a chronic and lifelong disease, managing citrin deficiency requires not only early diagnosis and the use of lactose-free or low-carbohydrate formula but also sustained adherence to a lifelong low-carbohydrate diet. This study aimed to investigate the dietary challenges faced by caregivers, particularly in non-familial settings such as schools, during children’s social development. Seventeen participants were recruited for our study, comprising 16 mothers and 1 grandmother. We applied constructivist grounded theory to explore the dietary management challenges faced by caregivers. Four focused codes were developed through analysis of caregivers’ interviews: (1) Upon entering school, concealment is the best choice; (2) reality has rendered it unfeasible for me to maintain command over the situation; (3) teachers and peers are gradually participating in food management; and (4) children need to establish their own individual identities within society. The findings revealed that as children entered school, caregivers shifted from direct to indirect involvement in dietary management. The involvement of teachers and peers, along with the development of children’s autonomy, reduced the level of caregiver control over dietary management. After the children began school, the caregivers’ involvement in dietary management gradually decreased. The presence of teachers and peers complicates dietary management for preschool and school-age children with citrin deficiency, progressively diminishing caregiver control.