Abstract
BACKGROUND: People from ethnic minority groups are disproportionately affected by COVID-19, less likely to access primary health care, and have reported dissatisfaction with health care. Although the prevalence of long COVID in ethnic minority groups is unclear, such populations are underrepresented in long-COVID specialist clinics and long-COVID lived-experience research, which informed the original long-COVID healthcare guidelines. AIM: To understand the lived experiences of long COVID in people from ethnic minority groups. DESIGN AND SETTING: Qualitative study of 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 of the data was conducted. People who were 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 socioeconomic 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 health care; 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 care and unsatisfactory experiences, resulting in feelings of mistrust in health care. CONCLUSION: Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in health care and improve the experiences of people with long COVID.