Background: 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 three years. As no cure is currently available, symptomatic management is the mainstay of treatment. An important part of this is optimising nutritional intake with evidence that this may positively affect survival and quality of life. Healthcare professionals (HCPs) play a pivotal role in nutritional management of people with MND but, to date, their views on the psychological barriers faced by people with MND have not been explored. Such an exploration may identify ways in which the delivery of nutritional care for people with MND can be optimised.
Methods: Five qualitative focus groups were carried out across the UK in June 2018 with 51 participants, including 47 healthcare professionals involved with MND care and four service user representatives. Data were analysed through thematic analysis.
Results: Four 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.
Conclusions: The findings suggest that the nutritional management of people with MND 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.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)