A qualitative exploration of how people with motor neurone disease who use tracheostomy ventilation understand and experience quality of life.

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: Five themes were identified following thematic analysis. PwMND who use TV associated quality of life with: i) Extending life; ii) Improving symptom management; iii) Adapting to living with MND; iv) Finding purpose; v) Staying positive. 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.