A Mixed-Methods Study of Eating Behaviours and Mealtime Experiences in Relation to Young People with Tourette Syndrome

Abstract

Research suggests that young people with neurodevelopmental disorders experience an increased prevalence of selective eating compared with their typically developing counterparts. However, very little research has specifically explored the eating behaviours of young people with Tourette Syndrome (TS). Moreover, the mealtime experiences for young people with TS and their families has yet to be empirically explored. This doctoral study aims to begin to fill these gaps in the literature by exploring the eating behaviours and mealtime experiences of young people with TS and their families. The objective of this PhD was twofold: (1) to identify traits and characteristics associated with TS and/or comorbid disorders that shape the eating behaviours and mealtime experiences of young people with TS and their families. (2) To identify mealtime challenges and how they are managed by young people with TS, mothers of young people with TS, and clinical professionals, if at all.

This pragmatic dissertation drew upon mixed-methods and multiple perspectives to provide a comprehensive understanding of the eating behaviours and mealtime experiences of young people with TS and their families. The quantitative studies were designed to compare the eating behaviours and positive mealtime attributes of young people with TS to typically developing controls; based on both self- and maternal- report. The qualitative studies undertaken followed a multi-perspective Interpretative Phenomenological Analysis (IPA) design. Three perspectives were sought, from: (1) young people with TS, (2) mothers of young people with TS, and (3) clinical professionals. The results are considered in light of a theoretical framework that incorporates Ecological Systems Theory and the Dialectical Model of Feeding Interactions. The findings suggest that the eating behaviours of young people with TS and mealtime experiences of them and their families are shaped by traits and characteristics associated with TS and comorbid disorders/behaviours. While some experiences mirror those of other populations with the same trait or characteristic (e.g., selective eating), others were categorically different, shaped by the distinct features of TS (e.g., tic-related challenges). The application of the theoretical framework allowed for an appreciation for the systemic complexity of mealtimes; a microsocial phenomenon that is interpersonal and intersubjective.

This doctoral study contributes to understandings of: (1) sensory sensitivity and rigidity as transdiagnostic mechanisms for selective eating, (2) the parent-child feeding dynamic during adolescence, and (3) highlights directive communication as an aspect of family mealtimes that may be a barrier to positive outcomes at best, and facilitate adverse outcomes at worst. The findings also highlight mealtimes as a social context where tics might present challenges that evoke emotional states that can exacerbate them. Tics have the potential to create functional mealtime challenges, affecting a young person’s ability to eat, drink and be seated. They also have the power to disrupt the conviviality of mealtimes. Eating out-of-home can be especially challenging, with restaurants in particular being high-pressure environments for young people with TS and their families. Young people with TS and their families can feel self-conscious and stigmatised when eating out-of-home, including friends’ houses, which may result in further social isolation and weaken social ties.

Clinicians’ accounts often paralleled those of young people and mothers. Although, there were a few notable differences. Clinicians focused more on the impact of appetite suppressing medications on the weight of young people, while young people focused more on weight gain associated with appetite stimulating medications. Additionally, mothers spoke about attempts to change their child’s behaviours, while clinicians discussed the importance of managing parental expectations and responses to young people’s behaviours. Taken together, the findings suggest that young people with TS and their families would benefit from specialised support to address some of the mealtime challenges they face and demonstrates the importance of clinicians taking a transdiagnostic approach to selective eating.