Design for empowerment: Supporting the self-management of people living with a chronic condition (lymphoedema) by design
This PhD thesis explores `empowerment` from the patient perspective and presents design guidelines to support the empowerment of people living with a chronic condition, lymphoedema.
Lymphoedema is a chronic condition that causes oedema/swelling of a part of body, commonly the arm(s) or the leg(s). It requires a daily management routine to avoid progression of the symptoms. People Living with Lymphoedema (PLWL) find continuously self-managing their condition challenging, and usually require comprehensive support. Patient empowerment is commonly set as an objective by healthcare organisations, to sustain their limited resources while maintaining patients’ increased quality of life. Designed products and services have the potential to facilitate or inhibit this empowerment. This thesis investigates the research question `How might we design to support the empowerment of people living with lymphoedema?`.
An iterative design research process was followed. First, following a systematic literature review, qualitative studies on lymphoedema experience were synthesised with theoretical models on health behaviour. Then, primary studies including observations, interviews, cultural probes and a co-making workshop were conducted. Design probes were developed and utilised to explore the past (how it was), present (how it is) and future (how it might be) of self-management with study participants who had lymphoedema.
The results presented empowerment as a multidimensional journey. Provided support should be tailored to address the stage-specific needs of patients in their empowerment journey. Design guidelines are presented to facilitate empowerment by providing the right support at the right time for the individuals. This journey-based approach to patient empowerment can further contribute to the research on personalisation of adaptive products for health and wellbeing. Although this thesis focuses particularly on patients with lymphoedema, similarities with experiences of patients with other chronic conditions were recognised, opening up possibilities for future research on design for other life-changing conditions and journeys.