Stigma, PF & quality of life in MS: V1
Research type
Research Study
Full title
Exploring the relationship between stigma, psychological flexibility and health related quality of life in individuals with Multiple Sclerosis.
IRAS ID
302953
Contact name
Craig Mackay
Contact email
Sponsor organisation
University of Edinburgh
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 9 months, 15 days
Research summary
Research Summary
Multiple Sclerosis is a chronic, degenerative, neurological condition which effects the central nervous system. It can cause a myriad of impairments, including mobility issues, fatigue and functional issues which can affect an individuals quality of life as they cope with the condition. There are various types of MS and the condition can effect individuals in different ways. Some people experience difficulties with sustaining employment, incontinence issues and others do not disclose their condition for fear of negative evaluations. The fear of stigma can influence how individuals live with MS. MS can influence individuals’ quality of life and mental wellbeing. The term ‘psychological flexibility’ relates to a series of mental process which have been implicated in the relationship between well -being and stigmatic experiences. It may be the case that those who possess more psychological flexibility are less affected by stigma, be it self- stigma or actual experiences of stigma and their well-being/ quality of life is less impacted than those who possess less psychological flexibility.
In order to investigate the relationship between psychological flexibility, stigma and wellbeing in people living with MS a cross sectional design study is proposed. The MS Trust, Ann Rowling Clinic & NHS Neurology Clinics in Lanarkshire will provide posters with a QR code to interested participants. Neurology Clinic respondents will be approached by their care team via an NHS research database. Individuals will be given the option to complete hard copies of the questionnaires should they choose to do so. The series of questionnaires will be held online using the survey platform Qualtrics. Individuals aged 16+ living with MS who speak English and are able to provide informed consent will complete the questionnaires which will take approximately 15 minutes. A debrief form with signposting to wellbeing resources will be provided on completion of the study.Summary of Results
This project explored whether self-stigma (when individuals’ incorporate negative attitudes about them onto their identity) was related to quality of life, amongst people with Multiple Sclerosis. Acceptance and Commitment Therapy (ACT) has popularised the term ‘psychological flexibility’ which relates to the development of acceptance skills, contacting the present moment and behaving in ways which are in line with an individuals’ values. It was proposed that psychological flexibility and emotional distress might account for some of the association between stigma and quality of life.
In order to test this proposal, a series of online questionnaires were completed by 208 people with MS. These measured stigma experiences, emotional distress, psychological flexibility and quality of life. The results indicated that psychological flexibility and emotional distress were relevant factors in the association between self-stigma and quality of life. Therefore these factors may be useful to monitor in clinical settings to prevent any harmful effects of self-stigma on the quality of life of people living with MS. An example of a treatment that may be useful in direct work to promote psychological flexibility amongst people with MS is Acceptance and Commitment Therapy (ACT). However, wider interventions which focus on the awareness of the detrimental effects of stigma may also be advantageous.
In summary, stigma experiences are important to account for when assessing and working with people with neurodegenerative conditions. Future research should continue to investigate stigma experiences amongst people with neurodegenerative conditions and aim to collect data at more than one time point. This might help to understand further how stigma affects individuals across the duration of their condition. Efforts to reduce the burden of self-stigma amongst people with MS are necessary in order to improve their quality of life.
REC name
London - Westminster Research Ethics Committee
REC reference
21/PR/1457
Date of REC Opinion
29 Nov 2021
REC opinion
Further Information Favourable Opinion