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A Research Study into Mothers' accounts of mealtime and feeding challenges for children with Tourette syndrome or persistent tic disorders.
Posted on 8 May 2024 by Pippa McClounan
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A summary of a recent research study supported by TA.
Thanks to the involvement of the TS Community, studies such as this one are able to occur. We like to report on the findings of these research studies, so you can see the benefits of taking part, so please read on for a summary of a 'Research Study into Mothers' accounts of mealtime and feeding challenges for children with Tourette syndrome or persistent tic disorders'.
A lay summary of one of the research studies conducted by Sandra- Eve Bamigbade as part of her Doctorate in Psychology
A qualitative study was carried out to investigate the mealtime experiences of families with a child with a tic disorder, looking at mealtime challenges, their impact and how these challenges are navigated. Seventeen mothers with children diagnosed with Tourette Syndrome (TS) or a Persistent Tic Disorder (PTD) (aged 3–14) took part in semi-structured interviews.
Interviews with mothers of children with TS and PTD were analysed using interpretative phenomenological analysis (IPA), from this process 2 main themes were conceptualised:
- ‘tics as a barrier to positive mealtime experiences’
- ‘eating behaviours and other mealtime challenges.’
Overall, parents of children with TS and PTD highlighted tics to create functional mealtime challenges, affecting a young person’s ability to eat, drink and be seated, with mothers noting the family dynamic was often intensified and compounded by additional challenges related to their child’s tics and comorbidities. Tics also had the power to disrupt the pleasure of mealtimes. For example, eating out-of-home can be especially challenging, with restaurants being high-pressure environments for young people with tics and their families.
Both the barriers to positive family mealtime experiences and sources of maternal mealtime stress tended to focus on selective eating and disruptive mealtime behaviours, which were further magnified by the functional and sometimes expulsive nature of the tics. Mothers were found to place high importance on family mealtimes. The cumulative effect of dissatisfaction, stress and additional foodwork may have a diminishing effect on maternal and familial resilience and wellbeing.
We are currently preparing articles related to clinicians and adolescents with Tic disorders views of feeding and mealtime challenges. It is hoped that the research will lead to an increased recognition of the challenges faced by children and adolescents with TS and support needed for them and their families.
Next steps following from this research, Sandra-Eve is currently undertaking a project in clinical practice assessing current level of eating behaviours, mealtime and sensory challenges that arise in the context of Tourette/Tic Disorder assessments when specific questions are not routinely asked.
Full article available below: Bamigbade, S, E., Rogers, S.L., 1, Wills, W., Ludlow, AK. Mothers’ accounts of mealtime and feeding challenges for children with tic disorders. Frontiers in Psychiatry.:
A full copy of the Thesis ‘A Mixed-Methods Study of Eating Behaviours and Mealtime Experiences in Relation to Young People with Tourette Syndrome’ is published on the University of Hertfordshire database: https://uhra.herts.ac.uk/handle/2299/25345
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