Investigating healthcare in the construction of disability
Research type
Research Study
Full title
Investigating the role of healthcare in the construction of patients’ experience of physical disability: A case study of dystonia patients and healthcare practitioners in England.
IRAS ID
134207
Contact name
Celia Janine Bernstein
Contact email
Sponsor organisation
University of Warwick
Research summary
’Investigating the Role of Healthcare in the Construction of Patients’ Experience of Physical Disability: A case study of
dystonia patients and healthcare practitioners in England.’
My proposed research aims to examine how individuals living with a neurological disability known as dystonia
understand and experience their condition. In addition, the study will analyse how health professionals who care for
people living with dystonia understand and treat the condition. The focus of my research is to examine the multiple
ways dystonia is understood, experienced and described by lay and health experts. The project will raise awareness of
the contradictions and complementarities existing between lay and health actors, suggesting potential ways in which
dystonia can be more effectively managed for the benefit of those living with the condition.
Three main research questions underlie my study. These are:
1) What are patients’ and professionals’ views and experiences of dystonia?
2) What role do current prescribed medications and treatments have in individuals’ experiences of living with dystonia?
3) How do social constructions of normality and disability influence patients’ experiences of dystonia?
Participants eligible for this study will include patients and individuals who have lived with dystonia for two years or
more, movement disorder specialists and support group representatives who represent individuals living with
dystonia.The study will be conducted at: one NHS movement disorder clinic in Birmingham and one NHS movement disorder
clinic in Oxford, patients’ homes (or a public setting such as a café or public park area, if preferred by participants) and
two dystonia support groups in Birmingham and Oxford.
The research will be conducted for approximately twelve months. Patients and healthcare practitioners will be
observed in the clinics (six-eight sessions at each hospital). Healthcare professionals will be asked to participate in an
interview which will be carried out for approximately thirty minutes. Patients will also be asked to participate in separate
interviews.REC name
London - Riverside Research Ethics Committee
REC reference
13/LO/1499
Date of REC Opinion
2 Jan 2014
REC opinion
Further Information Unfavourable Opinion