Primary Health Care Research & Development

Research

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

Kerin Baylissa1 c1, Lisa Ristea2, Louise Fishera3, Alison Weardena4, Sarah Petersa5, Karina Lovella6 and Carolyn Chew-Grahama7

a1 Research Associate, Institute of Population Health, University of Manchester, Manchester, UK

a2 Research Fellow, Institute of Population Health, University of Manchester, Manchester, UK

a3 Academic Clinical Fellow, National School for Primary Care Research, University of Manchester, UK

a4 Professor of Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK

a5 Senior Lecturer in Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK

a6 Professor of Mental Health, School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK

a7 Professor of Primary Care, Primary Care and Health Sciences and National School for Primary Care Research, Keele University, UK

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.

(Received July 23 2012)

(Revised March 07 2013)

(Accepted March 10 2014)

(Online publication May 23 2013)

Keywords

  • access to care;
  • black and minority ethnic;
  • CFS/ME;
  • chronic fatigue syndrome/myalgic encephalitis;
  • diagnosis and management;
  • primary care

Correspondence

c1 Correspondence to: Kerin Bayliss, Institute of Population Health, University of Manchester, 7th Floor Williamson Building, Oxford Road, Manchester M13 9PL, UK. Email: kerin.bayliss@manchester.ac.uk

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