Exploring the experiences of parents of children with Duchenne muscular dystrophy in Turkey: A descriptive phenomenological study

Abstract

Purpose

This study aimed to explore the experiences of parents of children with Duchenne Muscular Dystrophy (DMD) in Turkey.

Design and methods

A descriptive phenomenological approach was employed. Ten participants were purposively sampled and interviewed in-depth using semi-structured methods. Data was analyzed thematically. The reporting of this study was informed by the COREQ guidelines.

Results

The data revealed five themes: parental emotional reactions to learning about their child's diagnosis of DMD, parents as medical advocates for their child diagnosed with DMD, parental exhaustion from the day-to-day demands of caring for a child with a diagnosis of DMD, the DMD community as a lifeline for parents whose children have a diagnosis of DMD, barriers to adequate care for children with a diagnosis of DMD.

Conclusion

This study offered multifaceted dimensions of parents' experiences with DMD, providing insights into the distinctive challenges, and coping strategies within the Turkish context. Parents encountered intricate and systemic challenges, and their ability to navigate these complexities varied depending on their support networks.

Practice implications

Nurses can empower parents of children with DMD by addressing their emotional needs, educating them as medical advocates, and connecting them with community resources. Integrating these approaches into nursing practice ensures holistic, empathetic, and effective care, enhancing support and confidence for families navigating the challenges of DMD.