RESUMEN
BACKGROUND: People from ethnic minority groups are disproportionately affected by COVID-19, are less likely to access primary healthcare and report dissatisfaction with healthcare. Whilst the prevalence of Long Covid in ethnic minority groups is unclear, these groups are under-represented in Long Covid specialist clinics and Long Covid lived experience research which informed the original Long Covid healthcare guidelines. AIM: To understand lived experiences of Long Covid in people from ethnic minority groups. DESIGN & SETTING: Qualitative study with people living with Long Covid in the UK. METHOD: Semi-structured interviews with people who self-disclosed Long Covid were conducted (between June 2022 and June 2023) via telephone or video call. Thematic analysis was conducted. People living with Long Covid or caring for someone with Long Covid advised on all stages of the research. RESULTS: Interviews were conducted with 31 participants representing diverse socio-economic demographics. Help-seeking barriers included little awareness of Long Covid or available support and not feeling worthy of receiving care. Negative healthcare encounters were reported in primary healthcare; however, these services were crucial for accessing secondary or specialist care. There were further access difficulties and dissatisfaction with specialist care. Experiences of stigma and discrimination contributed to delays in seeking healthcare and unsatisfactory experiences, resulting in feelings of mistrust in healthcare. CONCLUSION: Experiences of stigma and discrimination resulted in negative healthcare experiences and mistrust in healthcare, creating barriers to help-seeking. Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in healthcare.
RESUMEN
Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people's management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.