Exploring factors that influence meal management and eating behaviours in people living with Huntington’s disease

Abstract

Purpose People living with Huntington’s disease (pwHD) experience cognitive and motor changes that affect meal planning, preparation and food consumption. This study explored factors that influence meal management and eating behaviours of pwHD and their families.Methods This is a qualitative study employing semi-structured interviews and thematic analysis. Participants included gene-positive individuals living in Perth Western Australia, ranging from asymptomatic or experiencing subtle changes, to early to mid-stage HD.Results Nine individuals (mean age 47 ± 12.3 years) were interviewed for the study, including five gene-positive being asymptomatic or minimal symptoms. Seven themes were identified reflecting participants’ existing meal management practices, including 1) independence and autonomy in meal management, 2) diet, food choices and eating patterns, 3) social dimensions of meals and eating, 4) relational dynamics and distribution of food labour, 5) meal-management challenges and stress, 6) adaptive strategies and support systems, and 7) food waste concerns.Conclusion The study identified the practical and social influences on meal management in people living with HD. Meal management is a multifaceted experience, and individuals respond to these challenges with diverse coping strategies and supports. Accessible meal solutions should accommodate diverse household contexts, support autonomy in food and meal-related decisions and reduce caregiver burden.