‘You’re Not Taking Us Down Duchenne!’ Seeing, Valuing, and Supporting the Resilience of Mothers of Children Living With Duchenne Muscular Dystrophy Through Positive Psychology Interventions

Abstract Mothers of young people with the rare, genetic, life-shortening condition Duchenne Muscular Dystrophy (DMD), face multiple challenges and pressures. DMD is characterised by progressive muscle degeneration affecting skeletal, respiratory and cardiac muscles. Many young people lose ambulation during adolescence and may require ventilatory support as respiratory muscle weakness progresses (Birnkrant et al., 2018). DMD can also be associated with other conditions, such as Autism Spectrum Condition, Attention Deficit and Hyperactivity Disorder, dyslexia and poor mental health. Whilst life expectancy has improved, given the rarity and everyday impacts of the condition on individuals and their families, the stress of caring for a young person with DMD can be significant. Not least, the wide range of medical and social care professionals involved, the ongoing struggle to secure care and appropriate resources, and the impact of living in an ableist society. This article documents findings from a small-scale pilot intervention with mothers of children with DMD, informed by positive psychology, which aimed to explore their understanding and embodiment of resilience. The study found that mothers were able to acknowledge their strengths, achievements, and resilience by engaging with positive psychology interventions, whilst recognising that adjustment was not linear. We argue that there is a need for health and care teams to employ a strengths-based approach to support mothers of children with DMD, acknowledging the expertise and experience that mothers can offer. Further, the intervention demonstrated the potential of using positive psychology interventions in workshops for mothers of children with DMD.