Investigating healthcare in the construction of disability. Version 2
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
147697
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 research aims to examine the lived experiences of individuals living with dystonia. The focus of the study will be how dystonia support groups support people with dystonia as well as how health care is delivered and experienced by people with dystonia. Therefore, the focus of my research is to examine the multiple ways dystonia is understood and experienced by lay and health experts.
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 support group members who have lived with dystonia for two years or more, health care professionals and dystonia support group representatives.
The study will be conducted at two outpatient movement disorder clinics at Queen Elizabeth Hospital Birmingham and John Radcliffe Hospital, Oxford, patients’ homes (or a public setting such as the hospital café, dependent on participant preference), two dystonia support groups in Birmingham and Oxford respectively.
The research will be conducted for approximately eight-nine months. Consultations between patients and healthcare practitioners will be observed at the Outpatient clinics for 6 – 8 sessions at each site). In addition, healthcare professionals will be asked to participate in a semi-structured interview (duration approx. 30 minutes). Patients in each site who have had dystonia for more than two years will also be asked to consent to an in-depth interview (duration approx. 90 minutes). The aim will be to interview 3-4 patients in each site.
REC name
London - Riverside Research Ethics Committee
REC reference
14/LO/0305
Date of REC Opinion
17 Mar 2014
REC opinion
Favourable Opinion