Being the lifeline: The parent experience of caring for a child with neuromuscular disease on home mechanical ventilation

We describe the experience of parents caring for children with neuromuscular disease (NMD) on home mechanical ventilation (HMV). Data was obtained from semi-structured interviews and analyzed using a phenomenological framework. Fifteen families including 19 parents of children with DMD (n = 3), SMA (n = 5), and other NMD (n = 7) participated. The central theme of these parents’ experience was being the “lifeline” for their child’s life and quality of life. The families’ lives changed significantly with the decision to place their child on HMV; over time, these changes became part of their new “normal”. Despite becoming expert caregivers, the parents experienced a recurrent sense of loss and uncertainty. Those who perceived insufficient support felt the weight of responsibility as sole care providers for their child with NMD. Beyond recognizing the parents as experts, more support by health care professionals, their extended family, and their community are needed to enable parents to fulfill their vital role.