Eating with Dignity. Exploring how eating can be improved for people with Amyotrophic Lateral Sclerosis, with focus on pureed diets

Abstract

Background: Amyotrophic Lateral Sclerosis (ALS), also know as Motor Neuron Disease (MND), is an uncurable aggressive neurodegenerative disorder. Malnutrition is common in people with ALS (pwALS) due to dysphagia, loss of appetite, and hypermetabolism. It can lead to neuromuscular weakness and negatively affect patients’ quality of life and survival. When pwALS encounter eating difficulties, pureed diet is often recommended. However, pureed diets have been criticized for being dull and lacking in variation but can be modified into a visually attractive diet, i.e., by using molds to shape the food. Making the pureed food more appealing and accessible is likely to increase patients' appetite, improve their nutritional status, and thus their physical and even psychosocial wellbeing. Aim: The aims are bipartite: 1) To increase the knowledge of eating experiences and the eating environment of pwALS, when pureed diet is needed and identify facilitators to increase their eating related well-being. 2) To investigate the food environment concerning pureed diets in Icelandic hospitals and healthcare institutions. Method: 1) Qualitative study. Three focus group interviews with healthcare professionals (n=13), service providers (n=7), and semi-structured individual interviews with pwALS and their spouses (n=5). The eating environment of pwALS was also observed. All the interviews and observations were recorded and transcribed. We used inductive content analysis to analyze the data. 2) Quantitative study. A REDcap survey on food environment for pureed food was sent to central kitchens at hospitals and nursing homes containing 11 questions, including incentives and barriers to making changes. Results: 1) One overarching theme was generated, “Eating with dignity during ALS – being a step ahead of time,” which contained three subthemes: a) Physical and emotional impact of eating difficulties – loss of eating abilities and seeking a personal adjustment to a downward trajectory. b) social impact of eating – attitudes and assistance from others, meaningful social events, and maintaining dignity. c) Context-related features – the setting of eating, access to equipment and healthcare, financial and other support. We provide a model of the dynamic interaction between different components of the findings. 2) Out of 23 answers,15 come from nursing homes. When divided by area,17 answers came from the countryside and six from the Reykjavík capital. Most employees who replied to the survey unanimously agreed that there is a need to improve resources to make higher quality pureed food in the Icelandic healthcare system. Summary and conclusion: It is clear that much can be done to improve the food environment of people with dysphagia. Easy access to attractive molded pureed diets in hospitals, nursing homes, home-food delivery, and supermarkets is important. Awareness must be raised among health rofessionals, service providers, pwALS and their relatives, and the larger community. Education needs to be established and policies to become clear, i.e., drawing up care pathways and using quality indicators. Finally, access for pwALS to a higher quality of pureed food is urgently needed. Our ultimate hope is that the results of this thesis will increase awakening of an attractive pureed diet in society and lead to changes in the food environment for patients with dysphagia in general.Keywords: dysphagia, pureed diet, amyotrophic lateral sclerosis (ALS), focus groups.