Living with tracheostomy ventilation for motor neurone disease: a qualitative study of family member perspectives

To examine the experiences of family members caring for people with motor neurone disease (MND) who use tracheostomy ventilation. Drawing on a constructivist interpretivist approach, qualitative interviews with family members from England, Scotland, and Northern Ireland were conducted. Data were thematically analysed to interpret meaning and identify key themes. Sixteen family members took part. Four themes are presented: (1) Decision-making and implementation: The decision about undergoing tracheostomy was driven by the person with MND. Tracheostomy ventilation was often initiated in an emergency, leaving families unprepared and distressed. (2) Impact on quality of life for family members: Responsibilities intensified once tracheostomy ventilation was in place, leading to a gradual erosion of personal autonomy for family caregivers. (3) Redefining family place and space: The continuous presence of paid carers and the medicalisation of the home impacted family dynamics. (4) Support for family members: Family members took on many roles with little support yet found meaning in the extended life of the person with MND. Enhanced psychological, social, and practical support is urgently needed for families caring for someone with tracheostomy ventilation for MND. Greater awareness of its long-term impact, realistic home assessments, and structured support networks are essential. Caregiving requires significant preparation and support; health care professionals should discuss the impact on families and allow separate time for relatives to raise concerns.Health and social care professionals should assess the home space to ensure it accommodates care delivery and family privacy, and discuss alternative care environments if the home is unsuitable.Knowledge about living with someone with tracheostomy ventilation is crucial, and connecting with others in similar situations is valuable; families from the study contributed to an online resource: [anonymised – weblink to be provided] Caregiving requires significant preparation and support; health care professionals should discuss the impact on families and allow separate time for relatives to raise concerns. Health and social care professionals should assess the home space to ensure it accommodates care delivery and family privacy, and discuss alternative care environments if the home is unsuitable. Knowledge about living with someone with tracheostomy ventilation is crucial, and connecting with others in similar situations is valuable; families from the study contributed to an online resource: [anonymised – weblink to be provided]