2026/04/29 by Nicola Turner, Eleanor Wilson, Christina Faull +3 · 1 voice
Health Professions · Medicine · #Amyotrophic Lateral Sclerosis Research #Dysphagia Assessment and Management #Neurogenetic and Muscular Disorders Research
paper · doi:10.1080/09638288.2026.2658439
openalex publication_date 2026/04/29 · openalex created_date 2026/05/01 · openalex updated_date 2026/07/02
PURPOSE: This qualitative study aimed to increase awareness of how people with motor neurone disease (pwMND) who use tracheostomy ventilation (TV) understand quality of life. METHODS: Semi-structured interviews were conducted with 14 pwMND (age 36-76 years) who had used TV for 3 months-12 years. RESULTS: . TV extended survival and improved management of symptoms such as breathlessness and secretions. Psychological adaptation and acceptance supported pwMND to focus on remaining abilities and sources of enjoyment, whilst the pursuit of meaning and purpose sustained a positive outlook. CONCLUSIONS: Quality of life for pwMND who use TV is multidimensional, encompassing physical, psychological, and existential domains. Findings underscore the value of a person-centred approach, recognising that pwMND can maintain a positive outlook despite significant limitations. A holistic assessment of quality of life is recommended, addressing not only physical health but also psychological and social well-being. Effective communication is required to ensure pwMND consider all implications of TV, including costs of adapting the home and demands of living with paid carers.