Firestormm
Senior Member
- Messages
- 5,055
- Location
- Cornwall England
This study was recently discussed by ME Research UK on Facebook (below). Quite interesting, given the historical bias - although that has I think already been discredited. Don't believe we have covered this study on the forum:
Made me also wonder how relevant this also might be to other populations e.g. with the possible exception of language barriers; many of the barriers could be said to apply to others.
ME Research UK:
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
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.
Made me also wonder how relevant this also might be to other populations e.g. with the possible exception of language barriers; many of the barriers could be said to apply to others.
ME Research UK:
Small study I think to reach a conclusion that people from BME populations are 2-3 times as likely to suffer from CFS/ME as whites; but there we go. Wonder what that would do to prevalence figures if they all received a diagnosis!Black and minority ethnic patients
It seems that people from the black and minority ethnic population are 2–3 times more likely suffer from ME/CFS than white groups, but (bizarrely) are less likely to be diagnosed with the illness.
A group from Institute of Population Health, University of Manchester has been examining why this might be – and what barriers might be in the way - http://bit.ly/16nLtU3
The researchers conducted semi-structured qualitative interviews with 35 ‘key stakeholders’ in North-West England, including 11 black and minority ethnic patients with ME/CFS and 5 community leaders, 2 carers, 9 GPs and 5 practice nurses.
Overall, several barriers were identified, including a lack of awareness of ME/CFS among black and minority ethnic respondents. Also, religious beliefs and family and community expectations were found to be important, since patients from ethnic minorities may be more likely to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing.
Language barriers may also make a diagnosis of ME/CFS harder to obtain. One aspect highlighted by the patients themselves was the importance of an on-going relationship with a GP, something which could be difficult in inner city practices with a high turnover of doctors.
The need for additional training for health professionals is stressed by the authors, who say, “Patients, carers and community leaders described how they believed that some GPs may hold stereotypical views of people from certain cultures such as being ‘lazy’, ‘complainers’ or ‘work shy’ ”, views which might prevent a proper diagnosis being given. There is also a need for culturally sensitive, educational resources for patients to explain symptoms and encourage them to come forward for help.