Participatory Co-design: Approaches to Enable People Living with Challenging Health Conditions to Participate in Design Research

People are living longer and are affected by challenging chronic, lifestyle- and age-related conditions such as dementia and stroke. The increasing number of people living with challenging health conditions highlights social concerns and their implications for the successful delivery of healthcare services. Research on improving dementia care [Alzheimer’s Disease International (2016) World Alzheimer Report 2016: Improving healthcare for people living with dementia: coverage, quality and costs now and in the future. Alzheimer’s Disease International, London] shows a need to involve people living with dementia, their families, and health and social care professionals when designing improvements to their healthcare services. In addition, involving patients recovering from stroke in discussions about rehabilitation services has been considered important to enable making decisions that better address their health care needs [Kristensen HK, Tistad M, Koch LV, Ytterberg C (2016) The importance of patient involvement in stroke rehabilitation. PLOS One 11(6). 10.1371/journal.pone.0157149]. This paper presents two case studies of a participatory co-design approach used to engage people; (a) living with dementia, and (b) recovering from stroke in design research, where co-design-led methods were used to enable participation. The paper describes the importance of each of the roles of—and relationships between—individuals involved in the participatory co-design research process and how people living with challenging health conditions are enabled to participate in a form of three-way relationship. It discusses lessons learned, reflections and recommendations for a new collaborative model for people living with challenging health conditions engagement to enable a more equal and reciprocal partnership for participation in design research into healthcare improvements.