The experience of being diagnosed with neck dystonia v 0.1
Research type
Research Study
Full title
The experience of being diagnosed with neck dystonia: An interpretative phenomenological analysis study
IRAS ID
287998
Contact name
Fiona Eccles
Contact email
Sponsor organisation
Lancaster University
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Dystonia is the name for a group of rare movement disorders which lead to tightening of muscles in certain areas of the body that restrict movement and activity. The most common type, usually experienced in adulthood, is neck dystonia, also known as cervical dystonia or spasmodic torticollis. The cause of neck dystonia is unclear, and no cure exists. It involves tightening of the muscles in the neck and head and can cause significant pain and disablement. There is often a difficult journey to diagnosis involving assessment by a number of health professionals, a long wait (five to seven years) and misdiagnosis. Research in other conditions suggests that a difficult experience during the pre-diagnosis phase can make adjusting to living well with the condition more of a challenge and in dystonia it is suggested that a difficult journey to diagnosis may discourage individuals from accessing support, particularly in relation to their mood. This study aims to carry out in-depth interviews with people who have been recently diagnosed with neck dystonia to understand the meaning that people make from this experience. This will help in considering how services may better support people.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
21/SC/0065
Date of REC Opinion
25 Feb 2021
REC opinion
Favourable Opinion