Young Adults and Parents’ Coping With Duchenne/Becker Muscular Dystrophy: A Focus Group Study

Abstract

Duchenne and Becker muscular dystrophy (DBMD) are genetic disorders that are characterized by progressive muscle weakness. As such, individuals with DBMD may need constant assistance with medical and physical care, which is oftenE provided by their family members. An essential part of patients’ medical management and their parents’ care is to develop appropriate coping strategies. This study focuses on young adults in the developmental period of emerging adulthood and parents, aiming to obtain an in-depth understanding of their coping strategies with DBMD. Qualitative methodology was employed and implemented within three focus groups: one group of young adults (ages 18–23) and two groups of parents. The findings of themes related to young adults and parents coping with DBMD included negative emotions alongside positive perceptions, hope, coping with loneliness in the context of being different, and familial adjustments. Our findings revealed similarities and differences in relation to both young adults’ and parents’ coping strategies, referred to in this study as “adjustments”. It may be advantageous to have an interdisciplinary professional team (i.e., physicians, nurses, and psychologists/social workers) intervene with young adults and parents to get a comprehensive understanding of the impact DBMD has on the multidimensional aspects of their daily functioning and the “adjustments” they employ to cope with DBMD.