Experiences of individually tailored physical exercise in boys with Duchenne muscular dystrophy: a qualitative study

Introduction: Excessive and insufficient physical exercise have both been associated with accelerated muscle function decline in boys with Duchenne Muscular Dystrophy (DMD), and optimal exercise remains unclear. Objective: This study explored participants' experiences with a one-year training program. Methods: Five semi-structured qualitative individual interviews and one focus group interview were conducted and analyzed using systematic text condensation. Results: Participants included boys with DMD who participated in the intervention study (n = 10), their relatives and/or assistants (n = 7). Four main themes emerged: 1) the crucial role of motivation to maintain training routines, 2) benefiting from exercise, but with a need for balancing it, 3) time management challenges, and 4) the training as a social arena and meeting place. The participants emphasized the importance of experiencing progress, basic skills and enjoyable training. Parents were reassured knowing the appropriate exercise intensity and technique. The boys needed flexibility and support to find a balance between exercise and other activities and described benefits from sharing experiences with each other. Conclusion: Clinical guidelines for physical exercise in DMD should encompass customization of exercise interventions supporting motivational factors, balance and social interaction, and identify competing commitments. Successful training programs may enhance quality of life and functionality for these boys.