Barriers and facilitators to emotional well-being and healthcare engagement in COVID-19: A qualitative study among patients with kidney disease and their caregivers

Background: Patients with chronic kidney disease (CKD) have disproportionately faced poor health outcomes during the coronavirus disease-19 (COVID-19) pandemic. Barriers and facilitators to patients' and caregivers' emotional well-being and healthcare engagement have not been deeply described, leaving a gap in interventions during future crisis settings. Methods: We conducted a qualitative study among patients with CKD (stages 4-5), kidney failure, kidney transplantation, and their caregivers. Interviews were guided by Leventhal's Model of Self-Regulation that emphasized individual interpretations and emotional responses to health threats as determining factors of health behaviors. Interviews were audio-taped, transcribed, and analyzed thematically. Results: Twenty-eight patients (median age 63, self-reported race: White 57%, Black 18%, Asian 1%, others 14%) and 14 caregivers were interviewed over six months. Barriers and facilitators related to patients' emotional well-being included 1) negative emotional responses (feelings of increased vulnerability, anxiety, social isolation, and depression);2) coping behaviors (adaptive coping via self-preservation and emotion regulation;maladaptive coping via alcohol and unhealthy eating);3) and the need for caregiver support for daily tasks. Barriers and facilitators to healthcare engagement included: 1) continued trust in the medical community ( I put my faith in [my doctor's] knowledge);and 2) technology (telehealth was a facilitator to access for some but inadequate for multidisciplinary care [my] transplant evaluation was stoppedwe could not go to the cardiologist). Caregivers reported higher burden compared to before the pandemic. Conclusions: Patients and caregivers widely reported negative emotional reactions to enforced pandemic-related social isolation. Coping efforts were partially successful. Telehealth provided adequate access to kidney health services for some but was insufficient for those requiring multidisciplinary care. Lessons learned from the COVID-19 pandemic suggest that patients with kidney disease may benefit from psychosocial and multi-modal structural support to offset social isolation, reduce caregiver burden, and bolster access to multidisciplinary care during future crisis settings.