Abstract

Background: Motor neurone disease is an incurable neurodegenerative condition that progressively impairs motor function. It affects mobility, speech, swallowing and breathing, leading to significant dependence on others. Home mechanical ventilation can alleviate respiratory symptoms and improve survival. Aim: To examine the experiences of bereaved family members involved in the care of someone with motor neurone disease who had died with home mechanical ventilation in place, or following its withdrawal. Design: An interpretive constructivist approach was used to carry out qualitative interviews. Setting/participants: Bereaved family members from England and Wales whose relative had died with ventilation in place, or after withdrawal. Results: Thirty-six bereaved family members took part. Their experiences highlight the extensive responsibilities and emotional burdens of managing home mechanical ventilation. Family members reported feelings of heightened responsibility, distrust in the abilities of professional caregivers, significant impacts on their mental and physical well-being and the ways in which knowledgeable care providers could lift such responsibilities. Conclusions: As the use of technology to sustain life increases, we need to question how much we expect of family members in providing care for those with complex interventions, such as ventilation, at home. This research underscores the critical role family members’ play in home care for people with motor neurone disease and calls for a greater understanding of the impacts of maintaining responsibility for life-sustaining treatments. There is a need for better support and training for both family and professional caregivers to alleviate some of the responsibility placed upon family members.