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|