Duchenne muscular dystrophy (DMD) is a serious hereditary muscle disease that almost only occurs in boys and men and causes the muscles to become weaker over time. Given scientific research thus far, they are encouraged to obtain and maintain an active lifestyle. This may help delay the symptoms of the disease and help preserve their upper and lower extremity functionalities for a longer period. Yumen Bionics, a Medtech startup, has developed a passive (motorless) exoskeleton that supports the males’ arm movements and collects data regarding the exact positions of both arms over time. As the exoskeleton is designed to especially benefit males aged 12-18, they will be considered as the target user group for this project. Since the exoskeleton has embedded sensors, Yumen Bionics yearned to investigate how they can give feedback to users and what type of feedback would motivate them to keep moving. This project aimed to apply Research through Design and co-creative approaches in order to explore ways in which a motivating data interaction scenario can be designed. These approaches foster iterative prototyping efforts and involve potential end-users in the design process. Throughout the entirety of the project, the Self-Determination Theory (SDT), a theory of human motivation, was used as inspiration during design development and as an evaluation tool. Since little was known about a males’ true motivations and behaviors behind interactions with healthcare services, the first phase of the project included a thorough user research cycle. One of the most prominent findings was that there is a disconnect between a male’s extrinsic and intrinsic motivations towards movements that are necessary for their health and wellbeing. It was hypothesized that Serious Games (digital games that can help facilitate physical activity) and/or Digital Twins (a digital representation of the user’s health status in real-time) may be an appropriate way of visualizing the data. The second phase focused on iteratively prototyping and testing these visualizations. This helped gain knowledge regarding users’ motivations and on design functionality, aesthetics, and practicalities. Given gathered insights, the last phase in the project aimed to bridge all the learnings and design a mobile application that can be seen as a valuable addition to the exoskeleton. This app, also known as “Exo-Pal”, provides meaningful feedback to the user regarding their everyday movement and is perceived to motivate them to move an optimal amount. Through the use of daily goals (moving thirty minutes per day), reward systems (receiving daily and ‘special’ badges), evolving visualization content and storylines, and Digital Twin technology (that takes the form of a ‘Pal’), it can be predicted that these main features can help maintain a user’s interest in using the product. All in all, Exo-Pal may help encourage males with DMD to reflect on their progress (or lack thereof), allow them to be more proactive about their health and well-being, and increase their feelings of autonomy.

Boys with Duchenne Muscular Dystrophy have a different life from most children. As they grow up, their muscles lose strength progressively. Around the age of 10, they lose their ability to walk, in their teens they slowly lose their arm function, in their twenties they often need respiratory support and their life expectancy is usually between 30 and 40 years old. To support Duchenne boys’ physical functioning and contribute to their independence, a passive exoskeleton has been developed to support their arm function. The exoskeleton is designed to be physically most beneficial for boys with Duchenne between 10 and 17 years old, which is therefore defined as the target group. It is expected that, as the boys in this target group mature, both their physical and emotional needs regarding medical aids, such as exoskeletons, will change. However, the exoskeleton is not yet able to mature with the user, to accommodate for those changing needs. The design goal of this project is therefore to redesign the exoskeleton to increase its ability to mature, both physically and emotionally, with Duchenne boys from 10 to 17 years old. In order to understand the requirements needed to meet the design goal, both physical and emotional needs of Duchenne boys are researched through a literature study and user research. Literature shows that the boys can physically benefit from the exoskeleton from the moment of wheelchair confinement (around the age of 10), but do not usually use arm supports until a much later age, or not at all, indicating a lack of perceived relevance for the target group. It also shows that there is a high variety in disease progression, so it cannot be predicted when the exoskeleton needs to be altered to fit and support the user physically. User research shows that there are three phases of growing up with Duchenne (Naïve Playful Kid (10-12 years old), Anxious Self-Conscious Teen (12-15 years old) and Constrained Reluctant Adolescent (15-17 years old)), who differ on topics such as confidence level, attitude towards their disease, responsibility, social life, relation with their parents, and relation towards healthcare products. Products can have a positive influence on emotional development if they can improve independence and individual functioning. Products can have a negative influence if they feel like an imposition, if the user has no control or choice over them, and if the introduction or alteration of the products confirm further muscle decline. For the exoskeleton to fit with the physical and emotional maturing process, it should therefore achieve the following design goals. The use of the exoskeleton should be made more relevant for each of the three emotional phases of growing up; the user should be able to focus on positive progress and anticipate on negative decline; the exoskeleton should accommodate for an increasing responsibility and independency of the user; and the user should feel like he has a sufficient amount of control and choice over the exoskeleton. For the exoskeleton to achieve these goals, a new concept is proposed, which consists of three components. Firstly, the exoskeleton is given an added functionality of controlling devices in the user’s house, by making movements. Secondly, an interface containing a coding platform enables the user to decide which devices are controlled with which movements, and through a communication platform he can ask questions and share experience. Thirdly, a service in which an expert regularly checks the exoskeleton’s hardware (physical fit and support) and software (controlling functionality). The concept increases the ability of the exoskeleton to mature with its user, because it ensures the exoskeleton fits well with the needs of all different ages in the target group and because the target group expects the concept to remain interesting for a longer period of time. They expect this because of the amount of possibilities and adaptabilities the interface provides, but also because of the combination of fun and extra independence the extra controlling function provides directly when using the concept. Furthermore, the expert service ensures the physical fit and support of the exoskeleton is regularly checked and updated, without confronting the target group negatively regarding their physical decline. By implementing the concept, the exoskeleton is expected to continue to be relevant for boys with Duchenne and give them a more positive experience as they mature from children to adults.