Use this URL to cite or link to this record in EThOS:
Title: Investigating the role of healthcare in the construction of lay experience of physical disability : a multimethod qualitative study of people living with dystonia
Author: Bernstein, Celia J.
ISNI:       0000 0004 7431 7529
Awarding Body: University of Warwick
Current Institution: University of Warwick
Date of Award: 2018
Availability of Full Text:
Access from EThOS:
Access from Institution:
The notion of ‘experiential knowledge’, or knowledge that is derived through and from people’s direct or indirect experience of a condition, has been elusively defined, particularly its relationship to biomedicine. While some researchers argue that this episteme exists independently of expert models of disease, others maintain that it develops alongside and/or through the pervasive hegemonic framework of biomedicine. This research makes a novel contribution to the aforementioned debates by analysing the various ways in which the relationship between experiential and medical knowledge can be both synergistic and epistemologically (dis)similar. This argument is developed through an exploration of the everyday experiences and experiences of healthcare of 42 individuals living with, and managing, the hyperkinetic movement disorder known as dystonia. In many cases of this condition, effective treatment options are limited and prognoses uncertain. Qualitative data were gathered through group and individual interviews and thematically analysed for patterns and relationships, as well as deviant cases. It was found that participants interpreted their experiential knowledge of dystonia in confluence with medical knowledge and their everyday realities. The dynamism of this interrelationship fluctuated in intensity according to the extent to which participants felt that biomedicine could provide them with a socially legitimated explanation of their visceral experiences across different contexts. For example, the negotiation of a diagnosis and/or treatment plan were sites where this interrelationship became particularly fraught resulting in varying dynamic synergies between the two forms of knowledge, which I have termed dissonant and resonant synergies. Through these novel concepts, I demonstrate how the relationship between experiential and medical knowledge transforms and shifts across the disease trajectory of a contested and complex condition like dystonia. In addition to these conceptual insights, a consideration of how health professionals could strive to resonate their knowledge with that of their patients’ is presented.
Supervisor: Not available Sponsor: Economic and Social Research Council
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: RC Internal medicine