We found significant gaps in knowledge and misconceptions about Parkinson’s in community settings and in primary healthcare. We learned that living with Parkinson’s is a complex experience – it can be difficult and isolating but also full of joy and connection. Typically, people with Parkinson’s move through shifting physical and emotional states, as they face fluctuating symptoms and social worlds, and the raft of emotions that accompany change.
Younger people with Parkinson’s who may live for many decades with the condition may struggle to manage long-term medication use, due to accumulating side-effects and disabling ‘on/off’ experiences (times when medication suddenly stops working). They described increasing stress and worry related to managing evolving symptoms, employment change and related financial issues, parenting, caring for elderly parents, social isolation, and conflict in relationships. In addition, many reported disabling experiences of stigma and other social barriers to inclusion, such as stereotyping.
As a person with Parkinson’s, Tara knows first-hand how hard it can be to communicate the experience of illness in a way that others can truly understand. As a social researcher, Tara is also aware that getting social issues and lived experience on the health agenda can be tough. But it is hard to ignore a stirring poem! Poetry grabs people’s attention and draws them closer, allowing others’ experiences to be felt and perceived.
The emotions expressed by participants during research interviews can be difficult to translate using formal academic writing, which is why research often struggles to provide in-depth understandings of human experience. Building poetic methods and other arts-based approaches into research design can help overcome this problem. Benefits include deeper research engagements and greater ability to develop co-design and collaborative studies.