Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study

Bayliss, Kerin; Riste, Lisa; Fisher, Louise; Wearden, Alison; Peters, Sarah; Lovell, Karina; Chew-Graham, Carolyn

Abstract

Aim
This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

Background
Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

Methods
Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

Findings
There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

Conclusion
Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

Citation

Bayliss, K., Riste, L., Fisher, L., Wearden, A., Peters, S., Lovell, K., & Chew-Graham, C. (2014). Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study. Primary Health Care Research and Development, 15(02), 143-155. https://doi.org/10.1017/s1463423613000145

• Journal Article Type: Article
• Acceptance Date: Mar 10, 2014
• Online Publication Date: May 23, 2013
• Publication Date: 2014-04
• Deposit Date: Nov 27, 2023
• Journal: Primary Health Care Research & Development
• Print ISSN: 1463-4236
• Electronic ISSN: 1477-1128
• Publisher: Cambridge University Press
• Peer Reviewed: Peer Reviewed
• Volume: 15
• Issue: 02
• Pages: 143-155
• DOI: https://doi.org/10.1017/s1463423613000145
• Keywords: Care Planning; Public Health, Environmental and Occupational Health
• Public URL: https://keele-repository.worktribe.com/output/648812
• Publisher URL: https://www.cambridge.org/core/journals/primary-health-care-research-and-development/article/diagnosis-and-management-of-chronic-fatigue-syndromemyalgic-encephalitis-in-black-and-minority-ethnic-people-a-qualitative-study/5C6E624EABBE8E414AC7977F728DD02E
• Additional Information: License: Copyright © Cambridge University Press 2013