‘A short time but a lovely little short time’: Bereaved parents' experiences of having a child with spinal muscular atrophy type 1

Abstract

These findings highlight the importance of a multidisciplinary approach to the care of such families, including psychosocial support beginning from the time of diagnosis and continuing to bereavement. We suggest areas for further exploration, with a goal to develop family-centred and evidence-based psychosocial care guidelines to complement the current Standards of Care for Spinal Muscular Atrophy.