Health care professionals’ views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis

Nicolò Zarotti, Elizabeth Coates, Alex McGeachan, Isobel Williams, Daniel Beever, Gemma Hackney, Paul Norman, Theocharis Stavroulakis, David White, Sean White, Vanessa Halliday, Christopher McDermott, on behalf of the HighCALS group

Research output: Contribution to journalArticlepeer-review


Motor neuron disease (MND), also known as amyotrophic lateral sclerosis, is a neurodegenerative disorder that causes progressive muscle paralysis and typically leads to death within 3 years. As no cure is currently available, symptomatic management is the mainstay of treatment. An important part of this is optimizing nutritional intake with evidence that this may positively affect survival and quality of life. Health care professionals (HCPs) play a pivotal role in nutritional management of people with MND (pwMND) but, to date, their views on the psychological barriers faced by pwMND have not been explored. Such an exploration may identify ways in which the delivery of nutritional care for pwMND can be optimized.MethodsFive qualitative focus groups were carried out across the United Kingdom in June 2018 with 51 participants, including 47 HCPs involved with MND care and four service user representatives. Data were analysed through thematic analysis.ResultsFour overarching themes were identified: psychological adjustment and patient engagement; nutrition and the need for control; knowledge of nutrition and the complexity of MND; and the psychosocial nature of eating.ConclusionsThe findings suggest that the nutritional management of pwMND should be mindful of factors such as the impact of distress at the time of diagnosis, the availability of clear information on nutrition and MND, as well as the importance of illness perceptions and coping strategies. Moreover, tailored psychological interventions should be considered to mitigate the impact on MND on the experience of eating.
Original languageEnglish
Pages (from-to)953-969
Number of pages17
JournalBritish Journal of Health Psychology
Issue number4
Early online date26 Aug 2019
Publication statusPublished - Nov 2019

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