Going home positive: a qualitative study of the experiences of care for patients with COVID-19 who are not hospitalized

BACKGROUND: Most Canadians diagnosed with COVID-19 have had mild symptoms not requiring hospitalization. We sought to understand the patient experience of care while being isolated at home after testing positive for SARS-CoV-2 infection. METHODS: We conducted a phenomenologically informed qualitative descriptive study using in-depth semistructured interviews to identify common themes of experience for patients sent home from hospital with a positive COVID-19 diagnosis. Between July and December 2020, we conducted interviews with patients who were followed by the North York General Hospital COVID Follow-Up Clinic. Patients with mild to moderate symptoms were interviewed 4 weeks after their COVID-19 diagnosis. We conducted the interviews and performed a thematic analysis of the data concurrently, in keeping with the iterative process of qualitative methodology. RESULTS: We conducted interviews with 26 patients. From our analysis, 3 themes were developed regarding participants’ overall experience: lack of adequate communication, inconsistency of information from various sources, and the social implications of a COVID-19 diagnosis. The implications of a positive test for SARS-CoV-2 infection are substantial, even when symptoms are mild and patients self-isolate as recommended. Participants noted communication challenges and inconsistent information, leading to exacerbated stress. INTERPRETATION: Participants shared their experiences of the stigma of testing positive and the frustration of poor communication structures and inconsistent information. Experiencing care during self-isolation at home is an area of increasing importance, and these findings can inform improved support, ensuring access to equitable and safe COVID-19 care for these patients.