Physical activity and sports participation are important for children’s physical and social development, including children with congenital heart disease (CHD). Although many children with CHD are medically able to participate, participation in practice is often hindered by uncertainty about what is safe and appropriate. This uncertainty is partly related to how information on sports participation is communicated between healthcare professionals, parents, sports coaches, and children. This graduation project, therefore, investigated the needs of stakeholders and designed a tool to improve communication and understanding around sports participation, to support accessible and inclusive participation in organized sports activities for children with CHD.

The project followed a human-centered and iterative design approach. Literature research and qualitative interviews were conducted and synthesized into journey maps, from which key intervention moments were identified. These insights informed the development of design requirements and initial concept directions, which were further explored and refined through two co-creation sessions with stakeholders. Two key components were subsequently evaluated with users to gather feedback.

The findings show that communication about sports participation is fragmented, unclear, and inconsistent across healthcare and sports contexts. In consultations, sports participation is frequently addressed briefly and superficially due to time constraints, variation in counselling practices, and assumptions about the child’s preferences and needs, which may result in possible underlying uncertainties or concerns of the child not always being discussed.

Parents are generally expected to pass on information to the sports environments and want control over what is shared with whom. However, this transfer of information often occurs without a standardized structure and carries a risk that medical guidance is interpreted differently once it reaches the sports environment. As a result, sports coaches may receive information that lacks clarity. Sports coaches are responsible for providing a safe, inclusive environment, but often lack CHD-specific knowledge and practical guidance.

Taken together, these findings suggest that improving communication and understanding requires a shared and structured approach that connects healthcare and sports contexts, supports consistent information transfer, and fits within stakeholders’ existing roles and working practices. Such an approach should make needs and uncertainties explicit, and support shared understanding of what is safe and appropriate to enable more inclusive sports participation for children with CHD.

To achieve this, a concept communication tool was developed to demonstrate how this approach can be supported in practice. The final design consists of a pre-consultation questionnaire and a sports advice form, supported by a digital parent-child sports advice platform. Prior to the consultation, children complete the questionnaire via their patient-portal, which enables the cardiologist to prepare in advance and tailor discussion during the consultation. Afterwards, the cardiologist completes a sports advice form, which families will receive.

They can use the platform to add context-specific information and filter which information from the sports advice they want to share with sports coaches and distribute it through their existing communication channels.

In this way, the tool brings together relevant information from various stakeholders and supports clearer and more consistent communication between the healthcare and the sports context, while fitting within existing workflows.

This project focuses on the often-overlooked role and requirements of family members who care for patients with cardiovascular diseases (CVD), particularly those recovering from myocardial infarction (MI) or having open-heart surgery (OHS). While cardiac rehabilitation (CR) programs are beneficial in improving patient outcomes and lowering risk factors, they are often centered around patients. However, family members play an important role in maintaining lifestyle changes and supporting rehabilitation at home, despite receiving minimal to no support.

The project proposes the Family Box, a personalized, digitally enabled support system based on the Leids Universitair Medisch Centrum's (LUMC) modular "Box," as a solution to this issue. The Family Box provides personalized support relevant to a wide range of family members. The research uses literature reviews, focus group data, qualitative interviews, and surveys, all of which are based on the human-centered design methodology ("Hear, Create, Deliver"). In addition to recognizing possibilities to empower family members through personalized support, this approach highlights important problems, including managing caregiver burden, understanding medical information, balancing household tasks, and addressing emotional needs.

The project states that personalization is important because a one-to-all solution can not meet every family member’s diverse needs and preferences. Through the development of a framework for personalization, a personalization strategy is designed for the Family Box. By considering a set of four personas (Protector, Adaptor, Talker, & Observer) based on dimensions like involvement, care approach, and emotional coping strategies, the system can personalize educational modules, goal-setting tools, and progress-tracking features. Using data from wearable devices and other health measurements, family members can receive meaningful updates, reassurance about the patient’s condition, and relevant lifestyle advice without becoming overwhelmed.

Early findings suggest that a Family Box can improve family member well-being, foster better collaboration between family and patient, and ultimately improve adherence to rehabilitation guidelines. Furthermore, by creating a scalable, modular system, the design can scale beyond MI and OHS to other care paths and eventually to preventive applications. However, ethical risks, such as protecting user privacy and preventing over-reliance on constant monitoring, must be carefully managed.

In conclusion, this project shows how personalized support can improve the involvement of family members in CR, leading to the improved well-being of both family members and patients. For further development, the project provides a roadmap for developing such a platform and highlights areas for further research, including the refining of data-driven personalization and larger-scale implementation studies. Additionally, the framework for personalization is discussed for application in other projects, using this project as a case study.