Impact of COVID-19 on Disease Self-management Among Patients With Advanced CKD: A Qualitative Study

Abstract

Rationale & objective: Patients with advanced chronic kidney disease (CKD) and their care partners experienced decreased access to care, and worse physical and emotional health during the Coronavirus Disease-19 (COVID-19) pandemic. Few studies have explored how COVID-19-related challenges affected disease self-management among those with advanced chronic kidney disease (CKD) and their care partners. Leventhal's self-regulation model offers a comprehensive framework for understanding disease self-management through the interplay of cognitive beliefs, emotional reactions and social influences. The study aims to examine the impact of COVID-19 on self-management activities among patients with CKD and care partners.

Study design: Qualitative study.

Setting & participants: Adults with advanced CKD, including dialysis and transplant recipients, and their carepartners.

Analytical approach: Thematic Analysis.

Results: Among 42 participants, 12 had stage 4 CKD, 5 had stage 5 CKD, 6 were receiving in-center hemodialysis, 5 had a kidney transplant, and 14 were care partners. We identified 4 patient-related themes with corresponding subthemes related to the impact of COVID-19 on self-management: 1) cognitive understanding that COVID-19 is an additional health threat to existing kidney disease, 2) heightened anxiety and vulnerability driven by perceived risk, 3) coping with isolation through virtual interactions with healthcare services and social circles, 4) increased protective behaviors to maximize survival. Three care partner-related themes emerged: 1) hypervigilance in family care and protection, 2) interaction with health system and adaptations to self-management, and 3) increased intensity in caregiving role to facilitate patient self-management.

Limitations: The qualitative study design limits the ability to generate generalizable data. Grouping patients with Stage 3 and 4 CKD, in-center hemodialysis, and kidney transplants together limited our ability to examine self-management challenges specific to each treatment requirement.

Conclusions: When faced with the COVID-19 pandemic, patients with CKD and their care partners experienced heightened vulnerability and thus increased cautionary activities to maximize survival. Our study provides the groundwork for future interventions to help patients and care partners live with kidney disease during future crises.

Keywords: COVID-19; Chronic kidney disease; Qualitative study; self-management; self-regulation model.

Figure 1

Cognitive (illness perception), emotional, and behavioral responses toward the COVID-19 pandemic among patients with CKD and their care partners: a conceptual framework. Abbreviations: CKD, chronic kidney disease; COVID 19, coronavirus disease 2019.