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

ABSTRACT

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.

KEYWORDS:

• Duchenne muscular dystrophy
• participant experiences
• physical exercise
• physiotherapy
• strength training

Introduction

Duchenne muscular dystrophy (DMD) is a severe progressive muscle disease primarily affecting boys. DMD is characterized by a gradual decline in muscle strength, leading to respiratory, cardiac, and musculoskeletal complications that typically arise during early adolescence (Birnkrant et al., 2018). Gradual loss of muscle strength leads to functional impairment and the boys typically lose the ability to walk around the age of 12 years. There is no curative treatment, and respiratory and cardiac failure significantly reduce life expectancy (Birnkrant et al., 2018). The median expected lifespan is 22 years, whereas for populations born after 1990, it is 28.1 years (Broomfield et al., 2021).

Boys with DMD often face numerous challenges and limitations in their daily lives due to the progressive and debilitating nature of their muscle condition (Bendixen et al., 2014). Throughout the day, they may encounter difficulties with fundamental activities such as walking, getting up from a chair, or moving around, often relying on mobility aids such as wheelchairs. These physical limitations can impact their participation in everyday activities, including play and sports, affecting their social interaction and sense of belonging among peers (Bendixen, Senesac, Lott, and Vandenborne, 2012). Additionally, fatigue is a common problem, causing them to tire quickly, even from simple tasks (El‐Aloul et al., 2020).

he benefits and disadvantages of physical exercise in boys with DMD has been debated for decades, and fear that exercise could be harmful have lead that children and adolescents with progressive muscle diseases have not been recommended to exercise (Lott et al., 2021; Spaulding and Selsby, 2018). Previous research indicates that both excessive and insufficient physical exercise can accelerate muscle function loss and functional impairment in boys with DMD (Markert et al., 2012). Recently there has been an increasing interest to evaluate whether physical exercise programs with moderate intensity may maintain or slow down decline in function, improve well-being and muscle strength in boys with DMD (Hammer et al., 2022).

Though, finding optimal exercise regimen and understanding its potential long-term benefits is a concern by physiotherapists, the boys themselves, and their families (Hammer et al., 2022; Markert et al., 2012), there is a lack of clear guidelines for physical exercise in individual with DMD, and uncertainties regarding the most beneficial types, frequency, and intensities of exercise (Hammer et al., 2022). To prevent injury and promote improvement, it is essential to understand how boys with DMD and their families can engage in exercise and how it should be tailored. Due to this knowledge gap, an intervention was designed to investigate whether an individually tailored exercise program could effectively enhance overall physical activity levels and, secondary, functioning, muscular strength, capacity, and quality of life in boys with DMD.

The purpose of this qualitative sub-study was to explore the participants’ experiences and perceptions of participating in a one-year intervention study involving individually tailored physical exercise for boys with DMD. The goal was to shed light on the physical, psychological, and social aspects of how their participation in the training program has influenced them.

Materials and methods

Study design and participants

This qualitative interview study using both focus groups and individual interviews is anchored in a bodily phenomenological approach as described by the philosophers Husserl and Merleau-Ponty (Merleau-Ponty, 1962), which provides an opportunity to explore and comprehend the boys’ unique bodily experiences with physical exercise. By attentively listening to their narratives and reflections, insights can be gained into how they perceive their bodies, the limitations they face, and the changes they have experienced through the physical exercise. This perspective contributes to acknowledging and attributing significance to their subjective experiences, offering valuable insights into how the physical exercise has impacted their bodies, self-perception and quality of life. Consolidated criteria for reporting qualitative research (COREQ) were used in the present study.

Participants (age 12–20) who had completed a one-year training intervention (n = 11) were invited to participate in the interviews. Inclusion criteria for age in the intervention was from 6 to 18 years but the age of the included participants ranged from 11 to 18 years. When the interviews were scheduled, the age span was from 12–20 years. Should any participants need or wish to have parental or personal assistant to provide support and guidance during the individual interview, they were offered this option. Ten of the 11 participants volunteered for the interviews. One participant was unable to participate due to scheduling conflicts and was consequently excluded from the study. Demographic information of participants is given in Table 1.

Table 1. Demographic information for boys diagnosed with DMD (n = 10) and relatives/assistants (n = 7).

Boys diagnosed with DMD	N = 10
Age (year)
Median (range)	16 (12–20)
Ambulation level
Ambulatory	4
Non-ambulatory	6
Lives with both parents
Yes	7
No	3
Receiving physiotherapy treatment
Yes	9
No	1
Participates in gym class at school
Yes	1
No	9
Other participants
Mother	2
Father	2
Grandparent	1
Sibling	1
Assistant	1

We used both focus group and individual interviews to gain a more comprehensive understanding of the boys’ experiences, thus obtaining a more robust and nuanced insight into how individually tailored physical exercise was perceived. The decision to use focus groups was motivated by the advantages of leveraging group dynamics for association and discussion, in addition to being time efficient (Polit and Beck, 2021, p. 515). Participants for individual interviews were chosen either because they required support and assistance to express themselves during the interview situation, or because the time for the focus group interview did not suit. Those who could express themselves more independently were asked to participate in the focus group interview. A semi-structured interview guide, based on research literature about boys with DMD and knowledge about the intervention was employed for the development of the interview guide. The interview guide covered a range of topics, including the participants’ overall experiences with the intervention study, their thoughts about physical activity and exercise, the training program itself, the sessions, and any recommendation for physical exercise with DMD. This study is part of a project aiming to evaluate the effectiveness of a one-year intervention study consisting of a physical exercise program. A sub-study wherein the test battery is assessed has been published (Eikeland et al., 2023). The main study was conducted between March 2021 and April 2022. Inclusion criteria for the intervention study were DMD diagnosis, age 6–18 years, ability to give informed consent, perform physical exercises, and to understand instructions. Exclusion criteria were language barriers or cognitive dysfunction. The main project and this qualitative study were approved by the Western Norway Regional Committee of Medical Research Ethics (2019/00260). For the boys who were younger than 16 years of age, approval was collected from their parents as well.

Short description of the physical exercise intervention

The physical exercise intervention included three hospital visits of five days duration held at the Pediatric Rehabilitation Clinic at the Haukeland University Hospital, Bergen, Norway, over the course of one year. The first session occurred at the start of the intervention, the second after six months, and the third after twelve months. Each session included protocol based multidisciplinary DMD follow-up, physical testing and individually tailored physical exercise program, which the participants were expected to carry out as a home-based training program between the sessions. The exercise program was implemented to everyday life as a routine in cooperation with the participants’ parents, personal assistants at the school and/or at home, in addition to participants’ community physiotherapists. These key persons were identified for each participant prior to training intervention start, and they were committed to organizing the training sessions and assisting the participant if needed.

The physical exercise program encompassed both strength- and endurance training, with a frequency of two sessions per week for strength and one session per week for endurance, ensuring a minimum of 48 hours of rest between sessions. The strength program included 6–8 exercises targeting the legs, hips, back, abdomen, shoulders, and arms, aimed at maintaining or improving overall function. Assistance was provided as needed during the strength training. The choice of endurance training was based on each participant’s home capabilities and could include activities such as swimming, arm/leg cycling, or walking. To measure and adjust the training intensity, the OMNI-Resistance Exercise Scale (Robertson et al., 2000) was used for strength training, while the Borg Rating for Perceived Exertion Scale (Borg, 1982) was utilized for endurance training. The Borg Rating for Perceived Exertion Scale was used to monitor the perceived load both during the activity performance and after the finished endurance activity to ensure intensity to correspond 11–13 or “somewhat hard,” defined as moderate intensity. The OMNI-Resistance Exercise Scale was used to adapt proper resistance or intensity, corresponding 4–6 (moderate or “somewhat hard”). If the resistance was reported to be too low (<4), the exercises was first adjusted by increasing the number of sets, then the load was adjusted. Both exercise dose, duration, intensity and frequency, compliance, the presence of pain, and general comments, were reported digitally to the investigators on a weekly basis during follow-up, and necessary adjustments were made. The training program is presented in Table 2.

Table 2. Dose principle/exercise prescription used in the individual exercise programs.

	Muscular strength	Cardiorespiratory/endurance
Frequency	2×/week	1×/week
Duration	30–40 minutes	15–30 minutes
Intensity	4–6 OMNI Resistance Exercise Scale	11–13 Borg scale
Equipment	Elastic bands Weight cuff Free weights Body weight	Depending on the type of exercise
Type of exercise	All Participants: Upper Extremities: Hammercurl, shoulder abduction, elbow extension. Lat pulldown with resistance band for upper back. Chest Press: Both arms or one arm at a time, utilizing either a resistance band or active guided movement. Row Exercise. Trunk: Sit-ups, back extension, lateral flexion from a sitting position against gravity or with an elastic band. Ambulatory Boys: Lower Extremities: Pushing a chair with a load of x kilograms (x meters). Knee Flexion (squat), hip extension (e.g., prone lying – lifting legs against gravity). Non-ambulatory Boys: Knee Extension and Flexion with manual resistance or elastic band. Hip Extension with manual or elastic resistance.	Depending on availability and preferences, such as swimming, cycling, Innowalker, indoor/outdoor walking, and virtual reality gaming.
Comments	All exercises were performed voluntarily, involving active, active-assisted/guided by a helper, or utilizing gravity.	Performed as intervals or continuous muscle work targeting large muscle groups.
Restitution	48-hour rest between the two weekly strength sessions.

Data collection

The interviews took place in a quiet room at the Pediatric Clinic. One focus group interview with five participants, and five individual interviews were conducted. In all the individual interviews, a family member and/or an assistant were present. The focus group interview was conducted with SDA as the moderator, and SH, who was project coordinator of the intervention study and therefore familiar with the boys and the intervention, as the co-moderator assisting by posing follow-up questions during the interviews. While five individual interviews occurred at the Pediatric Clinic, one individual interview was conducted via video call with the participant and SH present at the Pediatric Clinic and SDA on a large screen. Prior to the interviews, the research purpose and privacy considerations were thoroughly explained, and permission to record the interviews obtained.

The duration of interviews ranged from 30 minutes to one hour. All interviews were audio-recorded and transcribed verbatim by SDA, with fictitious names to ensure anonymity. The decision to conclude inclusion in the study after interviewing 10 out of 11 potential participants was driven by practical constraints, as the final participant was unavailable for an interview within our data collection time frame. We also determined that the data collected from the 10 participants engaged was substantial, rich, and relevant to address the research question (Malterud, Siersma, and Guassora, 2016). Five items have been suggested to have an impact on the information power: a) study aim, b) sample specificity, c) use of established theory, d) quality of dialogue, and e) analysis strategy. The focused nature of our research question and the shared experiences stemming from the same treatment program give support for the information power. The interviews and transcribed data were securely stored at the hospitals research server.

Data analysis

For analysis of data, systematic text condensation (STC) was employed. STC is a thematic cross case analysis suited for explorative analysis (Malterud, 2012). This analysis incorporated the perspectives of both the boys with DMD and the family members and/or assistants who accompanied them in the interviews. STC involves four steps: (1) The first step involves reading the entire text to gain an overall understanding of the content and to identify preliminary themes (i.e., Thoughts about training), (2) In the next step, meaning units related to the experiences of the boys and family members with physical exercise were identified. These meaning units were then organized into code groups (i.e., benefiting from training and need for balancing the training), and sorting the meaning units correspondingly, (3) From each code group and its subgroup condensates were abstracted. These condensates represent condensed and distilled versions of the data, capturing the essence of the participants’ experiences, and (4) In the final step, condensates were re-conceptualized to create synthesized descriptions shared by the participants. This step aims to provide a deeper understanding of the data and to establish meaningful themes. A final theme based on the above examples was “Benefiting from the exercise, but with a need for balancing it.” Through several analysis meetings, the authors agreed upon a consensus, and four main themes were established. The data analysis was conducted by three coauthors (SDA, LHM and MAS). Inspired by bodily phenomenological theory, we specifically looked for themes reflecting this approach, but the findings are not organized in a theory-driven template analysis style.

Results

We identified four main themes associated with the boys’ experiences and perceptions of individually tailored exercise for boys with DMD: the crucial role of motivation to maintain training routines, benefiting from exercise, but with a need for balancing it, time management challenges, and the training as a social arena and meeting place.

Theme 1: the crucial role of motivation to maintain training routines

The training was perceived as beneficial for most participants leading to improved health and that their body became stronger and more fit. However, consistent motivation was not always present among them. While some enjoyed the training and acknowledged its positive impact on their health and body, others perceived it as an obligation rather than a personal preference. The motivation was influenced by several factors. For some, filling out project-related questionnaires served as motivation to continue exercising, and when this requirement stopped, they felt no longer obliged to continue. Some likened the training to completing school homework: “it is something you need to do because it is good for you.” Motivation was described as a crucial factor in initiating exercise routines, and on days when motivation was low, it was hard to get started. One participant found the physical exercises demotivating because it placed greater emphasis on arm exercises rather than the walking exercises that held more personal significance for him. He felt very frustrated because it was so important to him to maintain the ability to walk. He even had suggestions for how the physical exercises could be set up to ensure improving/maintaining walking function: He didn’t see the usefulness of only training the arms.

I sometimes feel slightly demotivated it (the training program) doesn’t involve leg training. More generally, it focuses on arms (…) there’s nothing that can truly make the training more enjoyable or fun. However, I think it would be really nice if I could just walk (…) the only thing I want from the training is to be able to walk – P10

The mental aspect of motivation played an important role in participants’ experiences. Knowing that their training contributed to keep their disease at bay was a powerful motivator. Participants also stressed the importance of establishing positive daily routines and creating a motivating training environment to sustain motivation. They also emphasized the need for enjoyable training rather than driven by pressure. One of the boys expressed this:

For some, pressure can certainly be helpful, but it should emphasize enjoyment rather than being pressure-oriented (…) (the support from physios and assistants should) strive to collaborate and find good solutions – P6

Parents provided valuable insights regarding motivation for training. They emphasized the importance of engaging in enjoyable and meaningful activities, as well as providing positive feedback. To sustain motivation for training, one parent mentioned that they used to engage in something enjoyable after each training session, and the flexibility to skip training for a day, if the participant didn’t feel ready. This approach was considered a wise choice and contributed to long-term motivation for training. Many parents found reassurance in being able to witness progress caused by their child’s training. Seeing tangible benefits firsthand gave them the confidence and motivation to continue the training, knowing that it was being done correctly and safely for their boys.

It (sessions at the Pediatric Clinic) has provided us with a strong sense of security, especially when we have observed progress in some way – Sibling to P8

Theme 2: benefiting from exercise, but with a need for balancing it

Several participants highlighted the positive effects of exercise on their physical and mental well-being. They reported feeling stronger, experiencing fewer muscle- and joint discomforts, and finding daily activities easier to manage. One participant even shared a personal achievement of being able to lift a slice of pizza, but this newfound ability disappeared as soon as they ceased exercising, highlighting the transient nature of the benefits as well as the existential meaning of mastering an activity like this.

Didn’t experience many changes, the only thing I remember is that I managed to lift a slice of pizza, but the joy was quite short-lived because it wasn’t long before I couldn’t do it anymore. It was when I stopped exercising that I lost that ability – P2

Participants noted that the training contributed to stabilizing their disease progression, delaying the onset of functional decline. However, they acknowledged the importance of finding the right balance in their exercise routines due to the disease’s impact on fatigue and energy levels. They mentioned that they couldn’t train to the same extent as healthy individuals in terms of quantity and intensity. One of the boys expressed this:

The disadvantage of exercising with Duchenne is that you get much more exhausted and can’t train anywhere near the amount of what a normal person can do. If you exercise too much, you can easily get exhausted – P6

Relatives and parents of the boys’ stressed the importance of strength training for these boys and the critical need for proper technique and intensity. They emphasized that incorrect execution of exercises posed a risk of injury rather than maintaining their functional abilities. Awareness of training goals and outcomes was deemed crucial for all involved parties, and it took some time for them to find the right balance in regulating training intensity. Several relatives expressed challenges initially in regulating the intensity of the training, but as they gained more experience, they were able to find a suitable balance.

It was quite challenging for us to determine the right timing and training approach. Ideally, we didn’t want to exhaust him completely, meaning we shouldn’t train too intensely, but at the same time, we didn’t want it to be too light, you know. It was a bit difficult in the beginning, but it eventually worked for us – Sibling to P8

The boys also highlighted that it could be challenging to recognize when they were becoming too tired from training and expressed the need for regular check-ins to ensure safe and correct exercise practices. The training should not be too strenuous. While most participants experienced an increase in energy level due to training, one participant found it exhausting and counterproductive impacting his everyday life: “with training on top of it, I become completely exhausted and have no energy left.” To avoid excessive overall burden, one participant suggested assessing the number of hours spent on various daily activities before determining training volume:

One should try to conduct a survey beforehand, where you go through how many hours you spend on physical activity, so you can adjust according to that, how much time you generally spend on things – P2

When discussing further recommendations for physical exercise for boys with DMD, several of the relatives recommended ongoing follow-up and guidance from specialized healthcare services to ensure program adherence and correct implementation ensuring all parties to feel confident about the program. They emphasized the importance of knowing the appropriate exercise intensity and technique from the start to avoid the developing of poor habits and potential injuries. They also found numerical scales, such as the OMNI-Resistance Exercise Scale and the Borg Rating for Perceived Exertion Scale helpful for maintaining a consistent training routine. Overall, these insights underscored the multifaceted nature of training for individuals with DMD and the importance of tailored, monitored, and well-informed exercise programs for their well-being.

Theme 3: time management challenges

The theme of time management challenges sheds light on the difficulties participants faced in finding sufficient time to exercise within their busy daily lives. They mentioned that competing commitments, such as schoolwork and spending time with friends, sometimes led to training being unprioritized. Participants highlighted the need for flexibility and finding a balance between exercise and other activities. For some, exercise appeared to come at the expense of other activities they wanted to engage in. One of the boys expressed this:

Often, I choose to hang out with my friends or engage in other activities. If I were invited to do something right before my scheduled exercise, I would often choose to go along with that instead, leading to a missed exercise session that day – P2

Several relatives highlighted the role of both the family situation and support system around the boys in determining the feasibility of the training program. In specific family situations, where there are multiple children and both parents hold full-time jobs, managing time can pose a significant challenge. They emphasized the importance of having a robust support system that include assistants and physiotherapists. This support system helps the training program to fit seamlessly into the family’s daily life while providing the necessary assistance. Furthermore, to avoid the training becoming an additional burden to the boys, they underscored the importance to include the training assistants from the very beginning. This fosters a sense of ownership in the program, ensuring that it aligns with the boys’ needs and capabilities. Initially, there were doubts and skepticism about the training program and whether it could be implemented at all. However, after witnessing the program in action and observing its positive impact on the boys, skepticism gradually transformed into engagement.

In the beginning, I thought, “No, we’ll never manage this.” “Paul” (grandfather) was working full-time and was on the brink of breaking down at work. However, he retired about a year and a half ago, and then we were free. But, for that reason, I was very skeptical at first (…) “Paul” (grandfather) was very enthusiastic, and eventually, I became so too. I could see that this was really benefiting (our grandson). Then, after a few weeks had passed, both of us were on board – Grandparent to P6

Theme 4: the training as a social arena and meeting place

The final theme highlighted the participants experiences during the sessions within the physical activity intervention study. Many appreciated the social aspect and the opportunity to connect with others facing similar challenges, while some didn’t feel as comfortable socially and had a greater emphasis on adapting their training programs.

These sessions served as a valuable platform not only for training but also for mutual support and shared experiences among participants. While some participants may not have felt as comfortable socially during these sessions, the overarching sentiment was that they provided a crucial space for collaboration, learning, and progress in their training program. Many participants stressed the importance of including their support system, including parents and assistants, in the training process for achieving a successful outcome. They found these sessions as informative and beneficial for sharing experiences and exchanging valuable information. One participant expressed hope for the future, believing that a training program like this could prove beneficial for others with DMD, and that it could contribute to managing the disease and preventing its progression. One boy said:

I hope this (training program) continues. It could surely benefit others as well. It might become a long-term thing, keeping the disease in check. We never know – P3

This sentiment reflects a desire for the program to have a lasting positive impact on boys with DMD and offers hope for improved management and outcomes in the future.

Some of the relatives experienced that the sessions provided them with a sense of reassurance regarding the safety and efficacy of the training their boys were engaged in. The sessions offered a comprehensive overview of the training process, and they received updates on the results of the training as it progressed. This was something they found reassuring. One of the relatives even expressed regrets about not starting the training earlier, given the highly positive effect from it. Several relatives expressed gratitude for their participation in the project and described it as a wonderful experience. This highlights the value of such sessions in providing not only support but also a sense of confidence.

Towards the end of the sessions (at the Pediatric Clinic), we’ve also had the chance to review what we’ve gone through, looking at tables and such (…) Then, we can observe that he has changed over a longer period of time (…) so it’s been a great source of reassurance for us. The only thing we are very dissatisfied with is that this training hasn’t been available until now – Sibling to P8

Discussion

The findings of this study enhance our understanding of how boys with DMD and their caregivers perceived engaging in a one-year training intervention. It highlights the importance of motivation, the need for a balanced exercise regimen, time management challenges of training, and the value of social connections in tailored physical exercise programs for boys with DMD. To our knowledge, this is the first study of its kind, making it difficult to compare with previous research. Nonetheless, these findings can serve as a foundation for future research to optimize treatment approaches, especially concerning exercise and physical activity, for boys with DMD.

During the interviews, the boys discussed how their bodies related to their sense of limitations, challenges, and potentials. Several of them shared that after exercising, their bodies felt energized rather than fatigued. Although they might have initially felt a bit tired after a workout, they experienced a lasting boost in energy and vitality, leading to reduced need for rest compared to before starting their exercise routines. In a prior study by Hind et al. (2017), which focused on Aquatic Therapy for children with DMD, neither the parents nor the boys perceived fatigue as a significant challenge. The experience of post-exercise fatigue varied from “not tired at all” to “a little tired,” influenced of factors such as the timing of the training, particularly if it occurred right after school. For most of the present study participants, exercise had a predominantly positive impact on their health. They reported feeling stronger, experiencing fewer muscle- and joint pains, and, in some cases, finding relief from back pain. Moreover, they believed that exercise helped maintain the stability of their condition, leading to enhanced physical and mental well-being. These reflections suggest that exercise not only has a physical impact but also positively influence their mental health and their perception and emotions concerning their bodies.

Further, the boys shared their thoughts on how exercise influenced their physical capacities and ability for various activities. They vividly described the progress they achieved and positive effect of their exercise routines. Even in challenging circumstances, such as dealing with a broken foot, exercise helped them maintain and strengthen their functional abilities. They reported feeling physically stronger, which in turn enabled them to perform everyday tasks more easily. Mastering these exercises brought them joy and boosted their self-confidence. For most participants, experiencing these positive outcomes served as a significant motivator to continue and sustain their exercise routines. Similar statement has also been expressed by Travlos et al. (2016), which explored health-care engagement through the experiences of youth with neuromuscular disorders. In that study, participants mentioned that they were more likely to value health behaviors if they experienced immediate physical benefits, among other factors. The movement experiences shared by the boys in our study highlight the positive impact on their self-esteem and sense of accomplishment, underscoring the meaningful role exercise plays in their lives.

Furthermore, the boys reflected on the contextual factors that influenced their exercise experiences. They recognized that finding time for exercise amidst an already busy schedule, filled with ample leisure and social activities, could be a challenge. The importance of maintaining social relationships and spending time with friends often competed with the commitment to engage in exercise activities. Although the boys acknowledge the benefit of training, for some, it still felt like an obligation rather than something they truly wanted to do. A study by Bucks et al. (2009) highlights that even though adolescents with chronic conditions may possess knowledge about their health, their decisions to adopt and sustain health behaviors are influenced by their individual identity formation and development and quest for autonomy. This influence becomes particularly prominent when they perceive these behaviors as conflicting with their desire to feel “normal.” Similarly, in the study by Travlos et al. (2016), boys discussed whether integrating health behaviors into their daily routines was worthwhile. They described this process as leading to an understanding of the importance of a health behavior, where participants evaluated how it aligned with their sense of self and personal priorities.

The family context also played a significant influence, with some participants mentioning that coordinating family activities, such as dinners and weekend activities, could influence their ability to participate in exercise sessions. The boys’ families emphasized how various family situations and their support system influenced the feasibility of such a training program. In a study by Hind et al. (2017), challenges related to organizing training were also discussed, with some families requiring support from other family relatives to facilitate the training. In some cases, mothers chose to leave their full-time jobs to care for their boys. Conversely, some families had more flexible job situations, making it easier to accommodate the training within their family dynamics. On a positive note, the boys in the present study found joy in connecting with others who shared their health condition through the project. This provided them with a valuable opportunity to socialize and exchange experiences and information. These various contextual factors contributed to shape their exercise experiences.

We aimed to discuss the results from a bodily phenomenological perspective, considering that the bodies of these boys are progressively losing functionality and strength. It is worth noting that only a minority of participants openly addressed their bodily experiences related to their illness. Two of the participants, in particular, shared experiences related to bodily experiences associated with their illness. One described the experience of losing the ability to lift a slice of pizza, a brief function he had gained as a result of the training but lost due to the illness and discontinuation of exercise. The other expressed frustration about not exercising sufficiently to maintain their walking ability, a function they strongly desired to preserve for as long as possible. Turken, Balsak, and Ayhan (2023), identified dependent physical ambulation, which is common among these boys, as a risk factor for developing depression. Since the boys felt stronger and got increased well-being after physical training, one could argue that this could delay dependent physical ambulation and prevent development of depression. These experiences illuminate the degenerative nature of the disease and the emotional bodily experiences associated with it. A feasibility study of the muscle strength battery employed in the intervention study revealed that not all exercises were feasible for every participant (Eikeland et al., 2023). Discrepancies were observed between ambulant and non-ambulant participants concerning specific components of the muscle strength battery. This finding may lend support to the notion that the participants exhibit preferences for distinct types of training, potentially influenced by the stage of their illness. Several factors might explain the observation of participants not openly addressing their bodily experiences related to their illness. Some participants might have employed a defense mechanism to cope with the gravity of their condition, while others may not fully grasp or acknowledge the seriousness of their illness. Furthermore, some of the boys may have struggled to articulate these experiences verbally or deliberately distanced themselves from such discussions in a bid to preserve a sense of normalcy. Consequently, these factors may have contributed to the limited depth of information obtained from some of the participants during the interviews. Similar descriptions of participants’ ability to express themselves and reflect were also noted in the study by Walker et al. (2022), which focused on priorities and experiences related to weight management in children with DMD. In that study, the boys predominantly engaged in discussions in a very practical manner exhibiting limited reflection concerning weight and bodily function.

Few studies within the field of rehabilitation research incorporate the viewpoints of children with disabilities (McPherson, Keith, and Swift, 2014). Our study fills this gap by providing fresh insights into experiences and perceptions of boys with DMD regarding engaging in an individually tailored exercise program. In the study by Lott et al. (2021), it is indicated that exercise of moderate intensity is considered safe for boys with DMD. This aligns with the findings in this qualitative study, where the boys describe the perceived benefits of the training, noting increased vitality and higher energy levels for most participants.

Our sample consisted of 10 participants diagnosed with DMD, covering a diverse range of ages, functionalities, and geographical locations. Additionally, we had seven participants providing the family perspective, including parents, grandparents, siblings, and also one personal assistant. This diversity allowed us to approach our research question from various perspectives. However, it is important to note that our study was conducted within a specific context, at a single hospital. This context may have influenced the participants’ experiences and perspectives. Future research with samples from different contexts could provide additional insights into these matters.

One of the study’s limitations pertains to the absence of specific inquiries concerning existential aspects in the interview guide. This omission raises the possibility that the boys might have provided more extensive insights if they had been directly questioned on this matter. However, a strength of our study was the opportunity to involve family members and/or assistants during the interviews. This contributed to enriching the dataset as family members could assists the boys in expressing themselves more effectively, provide support for their narratives, and even supplement information for aspects they might have struggled to remember or express on their own. Consequently, this facilitated a more comprehensive understanding of the participants’ experiences and perspectives with the project. One potential limitation of including family members and/or assistants during the individual interviews is that it might have influenced the extent to which the boys were willing to share.

The presence of the project coordinator of the intervention study as a co-moderator during the interviews could have influenced participants’ responses, as they might have felt more positively inclined toward the project in his presence. However, it is important to note that, overall, the boys appeared to be honest and straightforward about their feelings and opinions during the interviews. In fact, the presence of the project leader was perceived as a strength. He assisted the participants in recalling important project-related details and pose relevant follow-up questions, and thereby enhancing the interviews and improving the quality of the data collected. Moreover, participants seemed to feel safe and comfortable with the project coordinator, fostering a favorable atmosphere for sharing their experiences and viewpoints. Furthermore, it is important to acknowledge that the data were interpreted and understood through the lenses of the coauthors who did the analysis. These coauthors come from diverse interdisciplinary backgrounds, which is a strength, as it allowed for the dataset to be analyzed and interpreted from various perspectives. This approach adds depth and richness to the interpretation of the data.

In our study, LHM, professor and PT, MAS, Ph.D. and MD, and TMA, Ph.D. and PT possess extensive clinical and research background in physiotherapy and medicine. LHM and MAS holds extensive experience within qualitative research. Neither of them participated in the group intervention, ensuring unbiased participation. TMA is the project lead of both this qualitative study and in the intervention study, and the main supervisor for the Ph.D. candidate, SH, in the intervention study. She holds extensive clinical and quantitative research experience within the field of neuromuscular respiratory care. SDA, MSc and PT, is the first author and main researcher in this qualitative study with the other researchers as supervisors. All researchers have contributed to the selection of research questions, theoretical framework and methodological approaches.

Conclusions

This qualitative study provides valuable insights into the experiences and perceptions of boys with DMD regarding engagement in a one-year intervention consisting of individually tailored physical exercise. The findings emphasize the importance of motivation, the necessity for balancing the training, time management challenges, and the significance of social interactions. These findings have clinical implications, potentially guiding the customization of physiotherapy treatment, physical activity, and exercise interventions. This, in turn, could lead to enhancement in quality of life and functionality for boys with DMD. Additionally, this study contributes to building a stronger foundation for the development of clinical guidelines for exercise in DMD.

Acknowledgments

We would like to thank the boys and their families who gave their time to participate in the interviews.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This study was funded by the Norwegian Fund for Postgraduate Training in Physiotherapy (Fysiofondet).