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

Post-acute sequelae of COVID-19, or "long COVID," affects nearly half of hospitalized patients, causing prolonged physical, cognitive, and psychological symptoms for at least a year. While longitudinal studies have documented the prevalence and range of these symptoms, patients' lived experiences, particularly in medically underserved populations like Black Americans facing socioeconomic disadvantage, remain poorly understood. Prior qualitative studies, mostly conducted outside the US, hint at unique challenges for COVID-19 survivors. The US healthcare system presents additional access, delivery, and post-hospitalization challenges, especially for minority populations. This study aims to bridge this knowledge gap by exploring the perspectives of a predominantly Black American population who survived COVID-19 hospitalization and identify barriers and facilitators to their recovery one year post-discharge.

Existing literature, primarily from outside the United States, indicates significant challenges faced by COVID-19 survivors in their physical, cognitive, and psychological recovery. These studies highlight the diverse range of persistent symptoms and their impact on daily life. However, there's a noticeable lack of research focusing on the experiences of minority populations within the US healthcare system, particularly those facing socioeconomic disadvantages. The disproportionate impact of COVID-19 on these groups underscores the need for this study to explore their unique experiences and identify potential barriers and facilitators of recovery.

This exploratory qualitative study, approved by the University of Pennsylvania's Institutional Review Board, recruited participants from the MESSI-COVID longitudinal cohort study. Participants were adult patients hospitalized for COVID-19, contacted approximately one year post-discharge. Eligibility required English proficiency. The sample size wasn't predetermined; instead, data collection continued until thematic saturation was achieved. A semi-structured interview guide, developed and piloted by a multidisciplinary team, explored participants' interactions with healthcare and daily living since hospitalization. Demographic data, financial security assessments, and social isolation measures were collected. Clinical data, including comorbidities, ICU admission, respiratory support, and length of stay, were abstracted from electronic health records. The Area Deprivation Index (ADI) assessed neighborhood-level socioeconomic disadvantage. Some participants completed functional assessments (EQ-5D, WHO-DAS-2, MRC Dyspnea Scale). Individual telephone interviews (30-45 min) were audio-recorded, transcribed, and analyzed using qualitative content analysis with constant comparison techniques. A codebook was developed, and inter-rater reliability was established (κ = 0.90). The team performed qualitative content analysis to identify recurring themes.

Of the 24 participants (71% Black, 54% residing in neighborhoods with severe socioeconomic disadvantage), 88% reported limitations in physical, cognitive, and psychological function. Persistent symptoms included breathlessness, mobility limitations, fatigue, sexual dysfunction, memory deficits, "brain fog," depression, anxiety, and fear. These symptoms significantly impacted participants' well-being across three major themes: 1. **Financial hardship:** Absence from work and increased medical bills created financial challenges, particularly for those unable to return to their previous jobs due to persistent health issues. 2. **Loss of a sense of self:** Physical and cognitive impairments limited participants' ability to function in their previous occupational and social roles, leading to feelings of insecurity and loss of identity. 3. **Loss of social connectedness:** Symptoms often hindered meaningful social interactions, negatively affecting relationships and social support. Participants described varying recovery trajectories, with most reporting slow improvement, while five reported complete recovery. Barriers to recovery included system-level factors (transportation, healthcare access, misinformation), clinician-level factors (inadequate attention to cognitive and psychological needs, poor communication), and individual-level factors (lack of familial support, stigma). Facilitators included insurance coverage, positive clinician relationships, supportive family and friends, and personal agency in health maintenance. Spirituality and gratitude were common coping mechanisms.

This study reveals the complex and interconnected challenges faced by COVID-19 survivors, particularly in the context of socioeconomic disadvantage. The persistent physical, cognitive, and psychological symptoms significantly impact not only physical health but also financial stability, sense of self, and social connections. The findings highlight the inadequate care for cognitive and psychological health, often overshadowed by the focus on physical symptoms. This inadequacy may stem from a lack of robust tools for identifying and quantifying cognitive impacts like "brain fog." The study's emphasis on individual-level facilitators underscores the resilience of participants, while also highlighting systemic and clinician-level shortcomings. This study significantly adds to the existing literature by focusing on the underrepresented experiences of Black Americans facing socioeconomic hardship. The interconnectedness of persistent symptoms and their impact on various aspects of well-being suggests a need for more comprehensive and holistic approaches to post-COVID-19 care.

This study emphasizes the complex recovery experiences of COVID-19 survivors, particularly among predominantly Black and socioeconomically disadvantaged populations. Persistent physical, cognitive, and psychological symptoms have significant downstream effects on socioeconomic and relational well-being. Future research should focus on developing and implementing interventions addressing these identified barriers and facilitators to improve long-term outcomes for COVID-19 survivors.

This study's limitations include recruitment from a single urban academic health system, potential selection bias due to recruitment from an existing cohort study, the exclusion of uninsured patients and those with limited English proficiency, and the focus on a specific demographic group. These factors may limit the generalizability of the findings to other populations and settings.