Design for hope : Identifying and expressing visions towards life after ALS diagnosis with tangible toolkits

Sammanfattning: In recent years, healthcare has been shifting toward a people-centred vision. Within the intersection connecting service design and healthcare innovation, co-design communication tools are increasingly being used to bring the voice of patients and their families into healthcare co-creation activities. Existing documented use of such tools primarily focuses on empathy and how designers derive inspiration from participants’ materials, while little draws on the actual design process and how design attributes can effectively support patients and their families in generating and expressing their dreams. From this perspective, this thesis first analyses existing tools that aim to elicit participants’ self-expression and evoke their future-oriented thinking, which strategies for designing a tool that supports individuals in expressing their dreams are identified with a particular focus on materiality and visuality. Taking a research through design approach, this thesis enters into the extremely challenging rare disease context to design a toolkit to help family caregivers of people with ALS identify and convey their dreams for life after diagnosis. Through observations of participants’ interaction during the prototyping process, this study further demonstrates that considering both the vulnerability and intelligence of patients (families) in the design of tangible toolkits effectively breaks participants’ habitual perceptions and brings them to an imaginative space towards the future. In doing so, co-design tools commonly used in service design can be better adapted to the healthcare context. Additionally, the thesis provides family caregivers’ questions, insights, and ideas about ALS healthcare services, thereby informing the future ALS healthcare innovation.