Disability and rehabilitation
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Mechanical ventilation has allowed a greater number of patients with Duchenne muscular dystrophy (DMD) to transition into adulthood. However, the role of a child's parent as a caregiver lasts throughout the child's lifetime. We explored parents' experiences of prolonged caregiving using serial interviews, analyzed using constructivist grounded theory. ⋯ Practical support for parental caregivers, who experience a marked increase in the duration of their caregiving role while facing their own aging-related challenges, are required. Implications for Rehabilitation Children with DMD are living longer and are transitioning into adulthood; a successful transition involves becoming as independent as possible and maintaining a positive sense of personal identity. Despite entering adulthood, the parental caregiver's caregiving role continues. Rehabilitation professionals, who are able to provide long-term, continued support from childhood into adulthood, should be aware that parental caregivers' weakness are exacerbated as the duration of caregiving increases. Families affected by DMD require multifaceted support that should include support for the parental caregiver.