Muscular dystrophies are a heterogeneous group of mainly hereditary diseases that affect the functioning of the muscle system. Few studies have focused on the psychological adjustment of parents of children with Duchenne muscular dystrophy. This study’s objective was to investigate the parents’ experience and the process of adjustment to the complex nature of their child's disorder. The study used a qualitative research design. Qualitative thematic analysis was used to analyze the data collected from parents (n=9) of children with Duchenne muscular dystrophy (n=10) using the technique of semi-structured interviews. The parents’ experience is characterized by painful and recurrent losses, which intensify their feelings of isolation and parental responsibility. On the other hand, parents develop internal coping mechanisms and identify sources of empowerment, which they evaluate as positive aspects of their experience. Recurrent losses alternate with periods of stability, hope and efforts toward normalcy in family life. Results of this study implicate the importance of adequate psychosocial interventions that will allow parents to cope with complex challenges, elaborate on their experiences and identify internal and external resources.
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In-Text Citation: (Koufaki et al., 2019)
To Cite this Article: Koufaki, I., Kedraka, K., Ierodiakonou-Benou, I., & Samakouri, M. (2019). Parental Experiences with Duchenne Muscular Dystrophy: Feelings of loss and Empowerment. International Journal of Academic Research in Psychology, 6(1), 16–29.
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