Understanding engagement of female multiple sclerosis patients
with healthcare resources through an interdisciplinary design approach
Sensing the system
Multiple sclerosis (MS) is one of the most common neurodegenerative diseases among young adults and affects approximately 15 000 Swiss citizens. Anna is one of them. The communication between her brain and body is disturbed and she experiences problems with her vision, fatigue, dizziness, and general pain. While there is no cure, there are many resources to manage the symptoms and maintain a good quality of life. However, the Swiss healthcare system is complex and fragmented.
Therefore, Anna is faced with systemic challenges in accessing and engaging with the care and resources available to her. Hence, Anna might not receive the best possible care, which has implications for her physical and emotional wellbeing. Therefore, this thesis aims to understand the factors that influence Annas› engagement with the healthcare resources (patient engagement) available to her. It aims to understand how Anna moves through the healthcare system and where challenges lie.
To understand the problem, design research in the form of qualitative interviews with patients, neurologists, experts, and caregivers was conducted. 3 main factors were identified, complemented by 5 secondary factors.
Dissatisfaction with the diagnosis (lack of initial support in understanding and coping), too short and infrequent interactions with the physician, and enabling network effects through the social system (partner, relatives, other patients) influence how Anna engages.
A participatory approach with patients and experts led to the final design concept. The MS Network navigator provides Anna with a tool to visualize her personal support network. Once it is visualized, she is enabled to reflect on the resources available to her and where she has opportunities or shortcomings. Based on this, she might take action to expand or change her network, In parallel, the navigator provides the option to connect Anna with Luisa, a retired working professional who volunteers. This service aims to provide Anna a constant informal source of support that can help her use the network map and engage in general.
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