Examining parental utilization of and barriers to psychological interventions in the Duchenne Muscular Dystrophy community

Background: Duchenne Muscular Dystrophy (DMD) is an X-linked neuromuscular condition. Parents of individuals with DMD report experiencing anxiety and depression symptoms. Psychological interventions including psychotherapy, psychiatry, and support groups have shown to be effective, yet tend to be underutilized due to attitudinal and structural barriers. Methods: 230 parents of individuals with DMD were anonymously surveyed to examine utilization and barriers to psychological interventions during the time of their child’s diagnosis and as the condition has progressed over the years. The Public Health Questionairre-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) was utilized for mental health screening. Distribution occurred through advocacy groups who reached out to their members via social media and email. Results were analyzed quantitatively using descriptive statistics. Results: Most participants did not utilize psychotherapy, psychiatry, and in-person or online support groups during the diagnosis (67.4%, 85.7%, 77.8%,78.3%) or disease progression (56.7%, 80%, 72.6%, 67%) stage. The top three barriers identified for not utilizing psychotherapy and psychiatry were “I felt that I did not need to”, financial reasons, and time constraints. The top three barriers for in-person and online support groups were lack of support group availability, “I felt that I did not need to”, and time constraints. Common qualitative barrier themes across all interventions included: being emotionally overwhelmed, other support resources, COVID-19 pandemic, and lack of resource information/availability. PHQ-9 screening revealed 94.78% and 91.63% of participants experienced varying degrees of depression symptoms with 42.6% and 23.26% who experienced moderate to severe depression during the diagnosis and disease progression stage, respectively. GAD-7 showed that 94.78% and 93.95% experienced varying degrees of anxiety and 58.26% and 34.41% had moderate to severe anxiety during the diagnosis and disease progression stage, respectively. Conclusions: Psychological interventions are underutilized by parents of individuals with DMD, yet a majority experience anxiety and depression symptoms. Low perceived need and lack of support groups were identified as major barriers. Healthcare workers, such as genetic counselors, involved in this community should use family-centered care, implement mental health screenings, and increase conversations regarding psychological interventions when appropriate. Furthermore, these results have public health significance in improving access to psychological interventions