The lived experience of Parkinson’s ‘A footprint in every room’

Abstract

Background: This PhD is part of the Wellcome Trust funded London and Brighton Translational Ethics Centre (LABTEC) Project investigating the social impact of developments in stem cell research and neuroscience. It contributes to the overall project by giving voice to the patient experience when faced with Parkinson’s, a serious progressive, degenerative and incurable neurological disease. Aim: The aim of this study is to provide a rich narrative account of how individuals diagnosed with Parkinson’s negotiate their illness, paying particular attention to the personal, social and historical conditions that mediate people’s stories. Methods: The study uses the data emerging from 37 interviews conducted with individuals whose experience of a Parkinson’s diagnosis ranged from 3 months to 33 years, and whose age at diagnosis ranged from 29 to 78 years. Methodologically, it is informed by Arthur Frank’s concept of dialogical narrative analysis (DNA), at the heart of which lies the desire to hear the different voices in any one person’s story. DNA is interested in hearing how stories shape participants’ understanding and experience of illness. At the same time, it recognises that stories have no ending because people constantly retell them in order to develop and revise their understanding of self. Findings: This study illustrates the importance of stories in enabling participants to reclaim their experience of Parkinson’s from others’ narrative representations of them. It also gives voice to the human significance of diagnosis after finding that, for many participants, the diagnostic encounter not only lacked ceremony but was also a point at which their voices were all but silenced. Finally, using Frank’s illness typology of restitution, chaos and quest as a ‘listening device,’ it becomes possible to hear the existential challenges facing participants as they try and make sense of their illness in the context of a society where restitution remains the preferred narrative and the search for a cure remains a stated goal of scientific research into Parkinson’s disease. Conclusion: The final thesis is a methodologically novel contribution to empirical bioethics which will inform discussions around policy and practice relating to the care and treatment of people with this particular neurodegenerative disease.

Date of Award	Jul 2015
Original language	English
Awarding Institution	University of Brighton