Parental Experiences with Duchenne Muscular Dystrophy: Feelings of loss and Empowerment

Abstract

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.

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

“…They emphasized the importance of sharing frustrations and burdens with those who could empathize, whether within a support group or among friends and family. Research by Koufaki and colleagues (2019) indicated that parents who take sole responsibility for their children’s care may limit their social interactions, leading to heightened social isolation and loneliness.…”

Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers

“…The importance of this is underscored by the emergent theme that AYAs were frequently unprepared to make health‐related decisions due to lack of experience. At the same time, the present‐day focus may, as Koufaki and colleagues note, be a way parents seek to control emotions related to an uncertain future for their child 23 …”

“…At the same time, the present-day focus may, as Koufaki and colleagues note, be a way parents seek to control emotions related to an uncertain future for their child. 23 Several caregivers described mistrust in the health care system, based on their experience with what they perceived to be a lengthy diagnostic process, finalized as late as five years old. This sense of mistrust persisted over time, with caregivers citing a preference to pay a private lawyer to draw up ADs rather than complete the freelyavailable versions available at the hospital.…”