Experiences of access to care, diagnosis and rehabilitation among a multiethnic patient population with long-COVID in Denmark

Abstract Background and aim The aim of the study was to explore the experiences of accessing care, diagnosis, and rehabilitation among patients with long-COVID in a multiethnic population in Denmark. Methods Qualitative research using semi-structured interviews among a purposive sample of 18 people diagnosed with long-COVID, according to the NICE guideline, in the Capital Region of Denmark. Participants were sampled to secure variation in sex, age, ethnicity, migration status and education. Our interview guide was developed using the theoretical framework of candidacy. Interviews were transcribed verbatim, and member checked, and subsequently analyzed using thematic framework analysis and NVivo software. Results The analysis generated four categories: i) living with long-COVID, ii) access to care, iii) experiences in the healthcare system, and iv) experiences with rehabilitation. A main category was identified from these categories: limited knowledge of COVID resulting in uncertainty, which challenged nearly all aspects of access to diagnosis, care and rehabilitation among the informants. In particular, ethnic minorities experienced that their motives for seeking care were questioned or had the experience of differential treatment. In general, participants perceived to be themselves responsible of recovering, while also struggling with the mental, social and work-related consequences of their long-COVID. Conclusions Our study demonstrated how the emergence of a new viral disease with unknown long-term sequelae results in a group of patients who to a great extend carry the burden of getting better themselves. More research into relevant diagnosis, care and support for long-COVID patients is needed, especially among ethnic minorities.