Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies

Abstract

This study set out to explore the lived experiences of parents raising a child with Duchenne Muscular Dystrophy (DMD) in South Africa. It addressed the challenges and coping strategies faced by three married couples of children, specifically male children, who are affected by this degenerative and fatal genetic condition. Purposive sampling was used and themes were highlighted through semi-structured interviews, employing interpretative phenomenological analysis (IPA). Major themes found included the reactions to the diagnosis; facing many losses and experiencing anticipatory grief; and learning to adapt. It was found that parents tended to vacillate between hope, grief, avoidance and presence, depending on their perceived level of support, contextual factors, and social and economic challenges. It was important for the parents to plan in advance and gain practical information about the illness in order to implement the necessary changes. The adjustment process was shown to be complicated. The final theme entailed what it meant for each family to create a meaningful life beyond the loss, and to remain hopeful about what lies ahead. It was concluded that amidst the unique and far-ranging challenges experienced on a daily basis, the parents started making changes that have had a positive impact on the lives of their sons and the entire family. These parents have found ways of cultivating meaning and hope in their everyday lives, doing everything in their power to grant their sons fulfilling lives. The findings support the need to incorporate strategies into existing services and health promotion programmes to build on the parents’ support structures, enabling them to adapt to the challenges they face on a regular basis. Further research into the disease impact in a South African context is necessary to improve care provision and inform policy.

Keywords: Duchenne Muscular Dystrophy (DMD); degenerative; fatal; genetic condition; male children; parents; lived experiences; challenges; coping strategies.