Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy: April 24–25, 2008, Miami, Florida

Fifteen participants representing clinicians and parents from Canada, the Netherlands, the UK, and the USA met in Miami on April 24–25, 2008 to attend a workshop that focused on facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy (DMD). The workshop, sponsored by Parent Project Muscular Dystrophy (PPMD), was organized in response to parent and clinician concerns that many families do not receive adequate psychosocial support following diagnosis. DMD is a complex multi-systemic medical condition with characteristics of both chronic and terminal disease [1,2]. This can present significant challenges to a family’s ability to adjust to a diagnosis of DMD, and a greater understanding of strategies that can be implemented to maximize positive outcome is necessary. Although not exhaustive, the topics covered in this workshop were judged to be of particular importance to those with DMD, and amenable to the development of specific interventions that could be implemented at the clinic level. The aims of the workshop were to (1) examine important factors that can have an impact on family adjustment and function following a diagnosis of DMD and (2) identify potential interventions and important windows of opportunity for affecting positive adjustment. It is our hope that these initial results will serve as a foundation for future exploration in this area.