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

Abstract

Sheffield Teaching Hospitals NHS Foundation Trust, UKMotor 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. Methods. Five 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.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 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.

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

“…In addition, even though perceived control is currently considered a critical factor for successful psychological adaptation to chronic illness (Dempster, Howell, & McCorry, 2015; Egede & Ellis, 2008) – and neurodegenerative conditions in particular (Eccles & Simpson, 2011; Simpson, Chatzidamianos, & Eccles, 2015; Zarotti, Coates, et al, 2019; Zarotti, Simpson, & Fletcher, 2019) – no intervention study has specifically addressed it as an outcome in people with PD. However, the results from two qualitative evaluations identified in this review have highlighted the potential of perceived control in supporting the implementation of mindfulness‐based therapy (Vandenberg et al, 2018) and psychoeducational programmes (Soundy et al, 2019), further strengthening the case for more thorough explorations of this construct in this population, and its impact on acceptability and response to psychological treatment.…”

Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS)

“…This began with data familiarization, to develop a preliminary list of codes. Following multiple revisions by three team members (NZ, AM, LC), codes were distilled into four overarching and distinctive themes on which all the members of the team agreed, two of which are presented here (the other two themes are presented elsewhere ( 18 )).…”

Psychological interventions for people with motor neuron disease: a scoping review

“…Since no specific test for MND is currently available, the diagnosis typically consists of multiple medical examinations aimed at excluding any mimicking conditions, which frequently translate into a long and uncertain path to diagnosis, lasting on average 10-18 months (4). This may, in turn, lead pwMND to experience high levels of anxiety and depression (8,9) and to develop coping strategies based on denial and avoidance (10)(11)(12), which can lead to poorer quality of life (13,14).…”

“…For example, dysarthria can impact psychosocial factors (17,18), leading to changes to perceived identity, feelings of self-consciousness, and negative emotions (19,20). Dysphagia has been linked to fear of choking (21)(22)(23)(24), loss of pleasure deriving from eating (25)(26)(27), and loss of control (10,(28)(29)(30). However, with the exception of fear of choking, many of these psychosocial and emotional consequences of physical symptoms would also apply to people with limb onset.…”