Patients' Perspectives on Life and Recovery 1 Year After COVID-19 Hospitalization

The study investigates patient perspectives on life and recovery one year after hospitalization for severe COVID-19, focusing on a predominantly Black American cohort with high neighborhood-level socioeconomic disadvantage. While long-term physical, cognitive, and psychological symptoms of COVID-19 (“long COVID”) have been documented, less is known about how these deficits affect daily lived experience in the US context, particularly among racially and socioeconomically marginalized populations. The research aims to explore the perceived impact of COVID-19 hospitalization and identify barriers and facilitators to recovery 12 months post-discharge.

Prior qualitative studies on COVID-19 recovery have largely been conducted outside the US and have underrepresented Black participants, limiting understanding of recovery experiences in the US healthcare context. Existing literature documents long COVID across disease severity levels and highlights potential access and delivery challenges within the US healthcare system, especially for racially and ethnically minoritized populations. The study addresses this gap by focusing on a predominantly Black American cohort and contextualizing findings with socioeconomic disadvantage metrics.

Design: Exploratory qualitative study reported per the Consolidated Reporting of Qualitative Research (COREQ) checklist. IRB approved. Setting and participants: Recruited from the MESSI-COVID parent cohort, a prospective study of adult survivors hospitalized with PCR-confirmed COVID-19 at two urban hospitals in one health system. Eligible participants had consented to longitudinal follow-up and were contacted approximately one year after hospital discharge (August 13, 2021–January 17, 2022). English proficiency by telephone was required. Sampling: No a priori sample size; enrollment continued until thematic saturation was achieved. Recruitment: Patients were contacted by phone, provided verbal consent, and scheduled for interviews; unreachable after three unsuccessful attempts. Participants received a $40 incentive. Data collection: A multidisciplinary team developed and piloted a semi-structured interview guide covering interactions with healthcare and activities of daily living since hospitalization. Demographics (gender, self-identified race), financial security, and social isolation were collected. Clinical data (age, insurance, comorbidities, WHO clinical progression scale, ICU admission, respiratory support, length of stay) were abstracted from EHR. Area Deprivation Index (ADI) was assigned by 9-digit ZIP code. To assess functional deficits and long COVID indicators, participants completed EQ-5D, WHO-DAS-2, and MRC Dyspnea Scale by phone with trained staff. Individual 30–45-minute telephone interviews were conducted by the PI, audio-recorded, and professionally transcribed; field notes were taken; transcripts de-identified and imported into NVivo 12. Analysis: The analytic team (medical student, physicians with qualitative and disparities expertise, epidemiologist, and qualitative coders) had no prior relationships with participants. A codebook was developed from deductive (guide-based) and inductive (open coding) approaches after close reading of four transcripts. Two coders established strong inter-rater reliability (kappa = 0.90 [range 0.46–0.90]); nine interviews (38%) were double-coded, remaining coded independently with periodic reliability checks. Qualitative content analysis with constant comparison was used to identify themes and relationships between codes. Field notes informed interpretation of context and emotional tone. Regular consensus meetings resolved discrepancies and confirmed thematic saturation at 24 interviews.

- Sample: 24 participants; 17 (71%) self-identified as Black; median ADI 82.5 (IQR 50.5–91), with 13 (54%) in neighborhoods with the highest ADI (severe disadvantage). During hospitalization, 75% required respiratory support and 33% were admitted to ICU. Among 19 who completed functional assessments at one year, 15 (79%) had moderate to severe dysfunction or persistent symptoms on EQ-5D, WHO-DAS-2, or MRC, meeting long COVID criteria. - Persistent symptoms (reported by 88%): Physical (breathlessness, mobility limitations, fatigue, sexual dysfunction), cognitive (memory deficits, “brain fog,” difficulty focusing/processing), and psychological (depression, irritability, fear, anxiety). These limited daily activities and functioning compared to pre-COVID levels. - Impact on well-being (themes): Financial hardship (lost work, medical bills, inability to resume prior jobs), loss of sense of self (role change due to physical/cognitive impairments), and loss of social connectedness (reduced ability to engage in relationships/activities). - Recovery trajectories: Many reported slow, incomplete improvement; five participants described complete recovery with no persistent impacts, consistent with patient-reported measures. - Barriers and facilitators: • System-level barriers: Transportation, office accessibility, high co-pays, limited rehab coverage, misinformation, interruption of home care early in the pandemic. • System-level facilitators: Insurance coverage enabling care access, telemedicine, patient e-messaging platforms, automated discharge follow-up. • Clinician-level barriers: Dismissal of persistent symptoms; prioritization of physical over cognitive/psychological needs; insufficient guidance on expectations/resources. • Clinician-level facilitators: Trusting relationships with specific clinicians; increased access via messaging portals. • Individual-level barriers: Limited knowledge of how/where to seek subspecialty/rehab care; lack of family support. • Individual-level facilitators: Supportive family/friends; increased personal agency and proactive health management; attention to diet/exercise/medication adherence; spirituality/faith; gratitude and attitude shifts.

Findings indicate that one year after COVID-19 hospitalization, most participants experience persistent physical, cognitive, and psychological deficits consistent with long COVID, which drive broader financial, identity, and social consequences. The alignment between qualitative reports and patient-reported measures underscores the robustness of identified deficits. Participants perceived adequate attention to physical needs but substantial unmet cognitive and psychological needs, highlighting a gap in current post-COVID care. Given the disproportionate burden on Black and socioeconomically disadvantaged populations, these results emphasize the need to integrate cognitive and mental health support, address financial toxicity, and improve system navigation and access to specialized services. The importance placed on individual-level facilitators reflects resilience but also signals inadequate system and clinician supports. Health systems should develop interdisciplinary post-COVID care models, enhance clinician awareness of cognitive/psychological impacts, and connect patients to social and financial resources, particularly for those in highly disadvantaged neighborhoods. Further research should assess whether these themes generalize across diverse racial/ethnic and geographic populations and explore intersectional effects.

This exploratory qualitative study of a predominantly Black, socioeconomically disadvantaged cohort highlights complex, interrelated impacts of persistent post-COVID symptoms on physical, cognitive, psychological, socioeconomic, and relational well-being one year after hospitalization. Despite perceived adequacy of care for physical symptoms, cognitive and psychological needs remain insufficiently addressed. Future work should clarify barriers and facilitators to recovery to inform targeted, interdisciplinary interventions and policies—such as specialized recovery clinics and enhanced support for vulnerable populations—to improve long-term outcomes after COVID-19 hospitalization.

- Single urban academic health system; findings may not generalize to other settings/regions and should not be taken as definitive for all Black or socioeconomically disadvantaged COVID-19 survivors. - All participants were insured; experiences of uninsured patients—who may face greater access barriers and worse outcomes—are not captured. - Interviews conducted in English; perspectives of patients with limited English proficiency and other cultural backgrounds may be underrepresented. - Potential selection bias: participants were drawn from a cohort already engaged in research and reachable post-discharge, which may not reflect all survivors’ experiences.