Tag: racism

‘I’m still here, I’m alive and breathing’: The experience of Black Americans with long COVID

Abstract:

Aims and objectives: In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults.

Background: As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients.

Design: We employed an interpretive description study design.

Methods: We recruited a convenience sample of 15 Black American adults with long COVID. We analysed the anonymized transcripts from race-concordant, semi-structured interviews using an inductive, thematic analysis approach. We followed the SRQR reporting guidelines.

Results: We identified four themes: (1) The impact of long COVID symptoms on personal identity and pre-existing conditions; (2) Self-management strategies for long COVID symptoms; (3) Social determinants of health and symptom management; and (4) Effects on interpersonal relationships.

Conclusion: Findings demonstrate the comprehensive ramifications of long COVID on the lives of Black American adults. Results also articulate how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate symptom management.

Relevance to clinical practice: Care approaches that support access to and implementation of integrative therapies may be best suited to meet the needs of long COVID patients. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue.

No patient or public contribution: While patient perspectives and experiences were the focus of this study, patients were not involved with the design or conduct of the study, data analysis or interpretation, or writing the manuscript.

Source: Bergmans RS, Chambers-Peeple K, Yu C, Xiao LZ, Wegryn-Jones R, Martin A, Dell’Imperio S, Aboul-Hassan D, Williams DA, Clauw DJ, DeJonckheere M. ‘I’m still here, I’m alive and breathing’: The experience of Black Americans with long COVID. J Clin Nurs. 2023 May 4. doi: 10.1111/jocn.16733. Epub ahead of print. PMID: 37140186. https://onlinelibrary.wiley.com/doi/10.1111/jocn.16733 (Full text)

Post-acute neurological consequences of COVID-19: an unequal burden

COVID-19 and its neurological consequences particularly burden marginalized communities, and so can only be effectively treated by advancing health equity.

Our world has witnessed over 275 million confirmed cases of COVID-19 and over 5 million related deaths1. Marginalized communities everywhere continue to be disproportionately affected as the pandemic amplifies longstanding health and healthcare disparities. As an example, in the United States, members of the Black, Indigenous and Latino communities remain two to three times more likely to be infected with SARS-CoV-2, to be hospitalized with COVID-19 and to die from this disease2. Dismantling structural racism is necessary to improve neurological health, as greater attention is focused on understanding and addressing the post-acute neurological consequences of COVID-19, or the neurological manifestations of what is sometimes called long COVID.

Read the rest of this article HERE.

Source: Nolen, L.T., Mukerji, S.S. & Mejia, N.I. Post-acute neurological consequences of COVID-19: an unequal burden. Nat Med 28, 20–23 (2022). https://doi.org/10.1038/s41591-021-01647-5  (Full text)

AMMES Stands Against Racism

The American ME and CFS Society wishes to make it clear that we unequivocally stand against racism in all its forms. Violence against black people is a long-standing blot upon our society, but it has now reached a crisis point. The recent murder of George Floyd has generated massive protests across the United States and around the world, but there are countless other black men and women whose senseless murders remain hidden from view. This assault against the black community must end. AMMES stands firmly behind Black Lives Matter and all other organizations which fight for justice and civil rights.

Racism is endemic in the United States. It is built into every facet of our society, from law enforcement to health care. In every manner, way, shape and form, black people have suffered the consequences of systemic racism. Violence against black people is not only manifested in assaults and murder, but in the enforced poverty imposed upon black communities and in a justice system that singles out black people for punishment, simply for the color of their skin.

People with ME/CFS may not be able to join the millions of people who are protesting in the streets, but we can express our support. If you have the money, you can donate to organizations such as the NAACP Legal Fund and the ACLU. You can contact your legislators at the state and national level and demand that police departments be held accountable. You can write letters to the editor, and post your support for Black Lives Matter on social media. There are additional actions you can take HERE.

Please join AMMES in supporting those who are seeking to eradicate racism.  Join us in saying ENOUGH!

 

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

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.

 

Source: Bayliss K, Riste L, Fisher L, Wearden A, Peters S, Lovell K, Chew-Graham C. Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study. Prim Health Care Res Dev. 2014 Apr;15(2):143-55. doi: 10.1017/S1463423613000145. Epub 2013 May 23. https://www.ncbi.nlm.nih.gov/pubmed/23702254