Kerin Bayliss1, Lisa Riste2, Louise Fisher3, Alison Wearden4, Sarah Peters5, Karina Lovell6, Carolyn Chew-Graham7. 1. 1Research Associate, Institute of Population Health, University of Manchester, Manchester, UK. 2. 2Research Fellow, Institute of Population Health, University of Manchester, Manchester, UK. 3. 3Academic Clinical Fellow, National School for Primary Care Research, University of Manchester, UK. 4. 4Professor of Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK. 5. 5Senior Lecturer in Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK. 6. 6Professor of Mental Health, School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK. 7. 7Professor 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.
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.
Authors: Joanna Leaviss; Sarah Davis; Shijie Ren; Jean Hamilton; Alison Scope; Andrew Booth; Anthea Sutton; Glenys Parry; Marta Buszewicz; Rona Moss-Morris; Peter White Journal: Health Technol Assess Date: 2020-09 Impact factor: 4.014
Authors: Amanda Wurz; S Nicole Culos-Reed; Kelli Franklin; Jessica DeMars; James G Wrightson; Rosie Twomey Journal: Qual Life Res Date: 2022-07-11 Impact factor: 3.440