9 Providing life-sustaining treatments at home for those with motor neurone disease: a qualitative study of bereaved family members’ experiences of responsibility

<h3>Background</h3> Motor neurone disease (MND), including Amyotrophic lateral sclerosis (ALS) are a group of neurodegenerative conditions that severely impair motor function. The disease affects mobility, speech, swallowing, and breathing, resulting in increasing dependence on caregivers. Home mechanical ventilation can be used to alleviate respiratory symptoms and extend survival, but it introduces significant challenges for family caregivers. This study explored the experiences of bereaved family members involved in the care of those with motor neurone disease who had died with home mechanical ventilation in place or following its withdrawal. <h3>Methods</h3> Qualitative, flexible interviews were used to explore the views of bereaved family members from across England and Wales. Drawing on a constant comparative approach, a thematic analysis was undertaken to identify, review and refine codes and interpret meaning. <h3>Results</h3> Thirty-six bereaved family members participated in the study. Their accounts revealed the extensive responsibilities and emotional burdens associated with managing home mechanical ventilation. Family caregivers often reported feeling unprepared and inadequately trained, which added considerable stress to their caregiving roles. Making critical end-of-life decisions about ventilation use further complicated their responsibilities, potentially exacerbating the grieving process. Central themes included feelings of heightened responsibility, distrust in the abilities of professional caregivers, and significant impacts on their physical and mental well-being into bereavement. However, participants noted that knowledgeable and supportive professionals could help mitigate these challenges, providing essential support and reassurance. <h3>Conclusions</h3> The findings suggest that as life-sustaining technologies become more prevalent, there is a need to reconsider the level of care expected from family members in managing complex interventions, such as ventilation. This study underscores the crucial role families play in caring for individuals with motor neurone disease. Ensuring there is adequate preparation and support for complex home-based interventions, such as ventilation, requires better support and training for both family and professional caregivers.