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 2019 (COVID-19) pandemic. Few studies have explored how COVID-19-related challenges affect disease self-management among those with advanced 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 aimed to examine the impact of COVID-19 on self-management activities among patients with CKD and their care partners.

Study Design

Qualitative study.

Setting & Participants

Adults with advanced CKD, including dialysis and transplant recipients, and their care partners.

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 health care services and social circles; and 4) increased protective behaviors to maximize survival. Three care partner-related themes emerged: 1) hypervigilance in family care and protection; 2) interaction with the health system and adaptations to self-management; and 3) increased intensity in the 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.

Plain Language Summary

During the coronavirus disease 2019 pandemic, patients with advanced chronic kidney disease (CKD) and their care partners faced reduced access to care and worsening physical and emotional health. Our study aimed to understand how coronavirus disease 2019-related challenges affected disease self-management for these individuals using Leventhal’s self-regulation model. We conducted a qualitative study with 42 participants, including patients with various stages of CKD and their care partners. Our findings revealed that both patients and care partners experienced heightened vulnerability during the pandemic, leading to increased protective behaviors and intensified caregiving roles. This suggests that individuals self-manage existing CKD based on their cognitive and emotional representations and interpersonal processes. This lays the foundation for future interventions for self-management for kidney disease during times of crisis.

Introduction

Advanced chronic kidney disease (CKD) is a complex condition requiring frequent health care visits and a high level of self-management.¹ Self-management is the day-to-day management of chronic conditions by individuals over the course of an illness, which involves medical, behavioral, and emotional management. Despite evidence of improved patient outcomes, self-management remains challenging for patients and care partners.2, 3, 4, 5, 6, 7, 8 Barriers to self-management of kidney disease include a lack of support from care partners, inadequate knowledge about kidney disease, poor communication with health care teams, and limited health care access.9, 10, 11 The coronavirus disease 2019 (COVID-19) pandemic presented an additional health threat for patients with advanced CKD, complicating self-management and increasing morbidity and mortality risks.11, 12, 13, 14, 15 Pandemic-related restrictions further impacted patients’ access to timely, high-quality care.^11,16

Prior research on CKD self-management has primarily focused on examining its barriers and facilitators, overlooking the importance of a holistic approach and theory-based intervention.^2,9,10,17, 18, 19, 20, 21 Leventhal’s common-sense model of self-regulation is a comprehensive framework that has often been used to understand the self-management of chronic illnesses such as diabetes and inflammatory bowel disease,^22,23 but is rarely used in CKD.24, 25, 26 This model highlights the role of cognitive beliefs, emotional reactions, and social-cultural influences in coping with health threats.^22,23 In the context of the COVID-19 pandemic, this model can elucidate how patients with CKD and their care partners perceive and respond to the risks and impact of COVID-19 on their kidney health and its potential implications for self-management behavior.

Guided by the self-regulation model, the study aims to examine the influence of the COVID-19 pandemic on self-management behaviors among patients with advanced CKD and their care partners. This will provide valuable insights into the unique challenges of self-management in advanced CKD and can be used to develop future patient oriented supportive interventions.

Methods

Study Design

We conducted a qualitative study using semi-structured interviews with patients across the continuum of advanced kidney disease and their care partners.

Setting

Patients and their care partners were recruited from the Healthy Transitions program, a program at Northwell’s Division of Nephrology designed to improve disease self-management among patients diagnosed with CKD who have an estimated glomerular filtration rate of <30 mL/min/1.73 m². The program educates patients and provides care coordination and supportive services. Patients receive services through this program from the initial diagnosis of advanced CKD through kidney failure and the initiation of kidney replacement therapy, transplant, palliative care, or death.²⁷

Participants

Researchers used the Healthy Transitions program database²⁷ to identify eligible patients and care partners. Participants were excluded when they were unable to speak English, had a history of dementia, or lacked the capacity to provide informed consent. We used purposive sampling to capture patients at different stages of kidney disease, including patients with stage 4 or 5 CKD, post-kidney transplantation, receiving hemodialysis, peritoneal dialysis, or conservative care. Eligible participants were identified through a retrospective chart review and enrolled via telephone. To recruit care partners, we contacted patients first and asked when they had a care partner. Then we asked to speak to the care partner for enrollment. Recruitment continued until thematic saturation was achieved; that is, when no new concepts emerged in subsequent interviews.²⁸

Qualitative Interviews

We developed a semi-structured interview guide informed by the self-regulation model,²³ focusing on the impact of the COVID-19 pandemic on the following areas: 1) perceived cognitive beliefs and emotional responses about COVID-19 and their kidney health; and 2) social and health care interactions.

We adhered to the Consolidated Criteria for Reporting Qualitative Research guidelines.²⁹ The study protocol was approved by the Northwell Institutional Review Board (IRB 20-0101). All participants signed an informed consent form. Investigators J.H.N. (nephrologist and epidemiologist) and C.H. (CANP) conducted each 1:1 semi-structured interview via telephone. Both investigators were trained by an expert researcher in qualitative studies (M.A.D.). Neither interviewer had any prior relationship with the participants. The participants were made aware of the purpose of the study and the investigators’ professions before the interview. The interviews (lasting 35-60 minutes) occurred from June 5, 2020, to August 5, 2020. Only the interviewer and participants were present during the interview. No repeat interviews were conducted. Interviews were audio recorded and transcribed. Transcripts were not offered to participants for review.

Data Collection

We collected demographic data, including age, self-reported gender, self-reported race and ethnicity, marital status, and clinical data from the Healthy Transition Database, including stage of kidney disease, length of time since initial kidney disease diagnosis, length of time in the Healthy Transitions program, maximum educational attainment, employment status, whether or not participants had made a decision regarding treatment in the event of kidney failure, existence of vascular access, and kidney transplant candidacy and status.

Data Analysis of Quantitative Data

We performed descriptive statistics, including means and standard deviations for normally distributed continuous measures, medians and interquartile ranges for skewed continuous measures, and proportions for categorical measures. All statistical analyses were performed using STATA 16.

Coding and Data Analysis of Qualitative Interviews

We conducted a thematic analysis of the transcription. We used a deductive coding approach, where we had predefined codes based on Leventhal’s self-regulation model.^22,23 The predefined codes were in the following categories: cognitive representations, emotional representations, coping behaviors and interaction with others. Two coders (JHN and CH) coded 10 transcripts independently. Discrepancies were identified, and differences were resolved through consensus. When consensus could not be reached, a third member of the investigative team (MAD) was consulted. Once an agreement was established, each subsequent transcript was coded by both investigators. The transcripts were read line by line to capture phrases and sentences relevant to the coding framework while taking note of data that did not fit the initial coding framework. Then, we revised the coding framework iteratively and grouped the codes into broader themes.

Results

Twenty-eight patients with kidney disease were interviewed (12 with stage 4 CKD, 5 with stage 5 CKD, 6 receiving in-center hemodialysis, 5 with a kidney transplant) and 14 care partners, resulting in a total of 42 participants. The characteristics of study participants are shown in Table 1.

Table 1.

Characteristics of Participants

Patient Variables	N=28
Age (y), Median (IQR)	63 (39, 71)
Sex (%)
Male	12 (43%)
Female	16 (57%)
Self-reported race
White	16 (57%)
Black	5 (18%)
Asian	3 (10%)
Others	4 (14%)
Self-reported ethnicity
Hispanic	2 (7%)
Non-Hispanic	26 (93%)
Self-reported highest educational attainment
High school and/ or less	11 (39%)
Associate degree or Trade School	8 (29%)
College and/ or higher	8 (29%)
Postgraduate and/ or higher	1 (3%)
Stage of kidney disease
Stage 4 CKD	12 (43%)
Stage 5 CKD	5 (18%)
In-center hemodialysis	6 (21%)
Kidney transplant (1 patient was on peritoneal dialysis before kidney transplant)	5 (18%)
Care Partner Variables	N=14
Relationship with patient
Spouse	8 (66%)
Relative	2 (17%)
Others	2 (17%)

Abbreviations: CKD, chronic kidney disease.

Guided by the self-regulation model, we identified 7 themes and 7 subthemes related to the effect of the COVID-19 pandemic on patients with advanced CKD and their care partners in terms of illness perception, emotional response, behavioral response, and interactions with health care providers and social circles (Fig 1). A full table of themes and illustrative quotes is shown in Tables 2 and 3. The similarities and differences in themes between patients and care partners are shown in Table 4.

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.

Table 2.

Themes and Exemplary Quotes (Patient-related Themes)

Theme 1: Cognitive understanding that COVID-19 is an additional health threat to existing kidney disease

(1a) For me, this virus could be fatal. I’m at even more risk because my immune system is suppressed. (P-27, kidney transplant recipient, aged 50 y)

(1b) I don’t think I would be as cautious as I’ve been when it wasn’t for my kidney disease. (P-1, stage 5 CKD, aged 70 y)

(1c) I know that because I have kidney disease, I have to be very cautious and safe. No one can come in here, and no one can go out, because I’m a big risk factor. (P-29, in-center hemodialysis, aged 50 y)

(1d) With my kidney disease, I’m vulnerable to getting (COVID-19). (P-30, in-center hemodialysis, aged 30 y)

(1e) I know that viruses and kidneys are not good together. (P-3, patient with stage 4 CKD, aged 60 y)

(1f) I’m too immunocompromised, and I already have stage 4 kidney disease. So, it was not a good place for me to be there in that sick environment [working in the ICU]. (P-9, patient with stage 4 CKD, aged 60 y)

Theme 2: Heightened anxiety and vulnerability driven by perceived risk

(2a) I’m really anxious, I just keep saying, I can’t get sick. (P-3, stage 4 CKD, aged 60 y)

(2b) I didn’t go [to the doctor’s office]…because I was very, very afraid of getting it because I didn’t want to stop the dialysis. (P-24, patient on in-center hemodialysis, aged 60 y)

(2c) My greatest fear of anything was COVID because I knew my immune system was really in bad shape (P-31, kidney transplant recipient, aged 50 y)

(2d) You already have kidney problems, and now COVID… I don’t want to worsen what I’m going through with something else. (P-1, patient with stage 5 CKD, aged 50 y)

Theme 3: Behavioral response and coping strategies through interactions with health care services and social circles

Subtheme: Trust and emotional reliance on health care team

(3a) To me, the most important thing is the doctors and nurses and the information and care that they give. Whatever they say, I put my faith in their knowledge. (P-19, patient with stage 4 CKD, aged 60 y)

(3b) I trust him [Dr S], so whatever he says, I will do, and that’s the end of that. (P-18, patient on in-center hemodialysis, aged 40 y)

(3c) When I ever needed the help, I’d probably call M [the nurse] … I call her about everything. (P-20, patient with stage 4 CKD, aged 70 y)

Subtheme: Telehealth and laboratory service-facilitated self-management (behavioral aspect)

(3d) They do the blood. The blood work tells the story… It was still a virtual [visit], but it turned out to be good. They said, “Why come to the office and risk anything?” (P-31, stage 5 CKD, aged 60 y)

(3e) They did the telemedicine thing. I asked for extra medications in case I couldn’t get there. (P-12, stage 4 CKD, aged 70 y)

(3f) I did the bloodwork, and my doctor called to talk through the results

(3g) We haven’t had a problem. My doctor over the phone, and it hasn’t really affected my visits. I just went for a sonogram. My husband gave me the Procrit shot; it came in the mail. (P-4, patient with stage 4 CKD, aged 60 y)

Subtheme: Fragmented care leading to challenges in self-management

(3h) The transfusion center closed when I was going to get a blood transfusion. (P-31, kidney transplant, aged 50 y)

(3i) My [ureteral] stent was supposed to come out in 4 weeks, and it didn’t come out for like 2 months… It had to come out because, you could get an infection (P-31, kidney transplant, aged 50 y)

(3j) I have a kidney available, but right now with COVID, I can’t do anything. I have to do dialysis until everything opens back up. (P-30, in-center hemodialysis, aged 30 y)

(3k) When the virus wasn’t here, I would be probably on the [transplant] list already. (P-3, CKD stage 4, aged 60 y)

Subtheme: Disrupted social support affecting coping strategies and self-management

(3l) My family can’t see me. They only could bring stuff to the door. I can’t have company. The church is closed down, everything. (P-29, hemodialysis, aged 60 y)

(3m) I can barely hear them [doctors] between the mask and the machines and alarms. You don’t feel like you have that same level of personal conversation with people. (P-24, hemodialysis, aged 60 y)

Theme 4: Increased cautionary behaviors to maximize survival

(4a) What I needed to do was just follow what the CDC and the state said about taking care of yourself with COVID. I wear a mask on a regular basis. That stuff [groceries] needs to be brought home and rewashed. (P-17, stage 4 CKD, aged 60 y)

(4b) We just like to be very careful. If you go out, then you have to have your mask, like washing your hands and social distancing and everything. (P-16, hemodialysis, aged 80 y)

(4c) I know that because I have kidney disease, I have to be very cautious… “No one can come in here, no one can go out, because I’m a big risk factor.” (P-29, in-center hemodialysis, aged 50 y)

(4d) Well, I’m not going anywhere near doctors or hospitals until this is over. I’m not taking any chances, not just for me but for my husband too, When I bring something onto him. When it is, you know, it could ruin his chances to get his transplant. (P-3, stage 4 CKD, aged 60 y)

(4e) I took a family medical leave because I work in the ICU. The whole hospital and the ICU were completely full of COVID. So, I kept myself off work. (P-9, stage 4 CKD, aged 60 y)

(4f) My family helps me somewhat, like they would do all my shopping during the COVID because I didn’t want to get exposed to anything, and my husband didn’t want to go out either because he didn’t want to bring anything home (P-23, in-center hemodialysis, age 60 y)

Abbreviations: CDC, Centers for Disease Control and Prevention; COVID, coronavirus disease; CKD, chronic kidney disease, ICU, intensive care unit.

Table 3.

Themes and Exemplary Quotes (Patient-related Themes)

Theme 1: Hypervigilance in Family Care and Protection

(1a) Because we’re both having underlying conditions, although most people are being 99% careful, we’re being 100% careful.” (P-22, spouse of a patient on in-center hemodialysis)

(1b) I’m really scared to take my dad to the hospital because I’m really scared about my dad’s [health]. (P-8, son of a patient with stage 5 CKD)

(1c) But like, still continue with the strict protocol [cleaning], and all the kids know it; everyone knows it (chuckles). We told you we were not going to be the ones to get Grandpa sick. (P-38, daughter of patient on in-center hemodialysis)

Theme 2: Interaction with health system and adaptations to self-management

Subtheme: Telehealth facilitating self-management for some

(2a) A lot of doctors will just do telehealth with us (P-34, spouse of a patient with stage 4-5 CKD)

(2b) Her doctor sent somebody here to take blood. And she’s in contact with her medications and stuff. When she had to go in for a visit, I think they would take her.” (P-5, spouse of a patient with stage 4 CKD)

(2c) And because of the pandemic, we have been able to do telehealth with Dr N, who is the kidney. “Even when I have a question, I’ll ask him for some help on something or another.” (P-39, spouse of a kidney transplant recipient)

Subtheme: Major Disruption in Healthcare Services and self-management challenges for those with complex needs

(2d) His urologists held off on changing the tubes because there were so many COVID cases at the hospital. (P-36, spouse of patient with stage 4 CKD)

(2e) We were thinking of setting up the fistula and catheter, and then the pandemic came and everything changed. (P-8, son of a patient with stage 5 CKD)

(2f) He has living donors, which would be my sister and myself. But with the pandemic, we were stopped in our tracks. (P-38, daughter of a patient on in-center hemodialysis)

(2g) I took her to the primary doctor, and I could not even go in with her…. but she doesn’t understand what is going on because I am the one that is taking care of everything. I am the one that gives her the medication… I am the one that knows. (P-37, daughter of a patient with stage 4 CKD)

(2h) It was hard because of the language barrier. She was bleeding in her brain, and she was confused about what she saw somebody [in the hospital] doing to her until I was able to talk to one of the nurses and beg her to let me do a video call. (P-37, daughter of patient with stage 4 CKD)

(2i) I made an appointment with Dr H to set up his catheter, but it just totally changed because of COVID. I’m really scared about my dad. So, that’s why I always make appointments early in the morning so that I can take them quickly and then get out very quickly. (P-8, son of a patient with stage 5 CKD)

(2j) “Originally, we would go to a hematologist for those shots, but it was very inconvenient. And when COVID came, it was really difficult. We switched to going to a local laboratory. Dr R would monitor whether he needed a shot or not. “And we are sort of staying with that game plan right now.” (P-13, spouse of patient with stage 4 CKD)

Theme 3: Increased Intensity in the Caregiving Role to Facilitate Patient Self-Management

(3a) He’s on 20 medications, so there’s a lot of things that I get from CVS, because of this pandemic he doesn’t go into the stores. (P-39, spouse of patient with a kidney transplant)

(3b) Because of the COVID, I asked them whether they could teach me [erythropoietin shots] because I didn’t want to take him out of the house. (P-34, son of a patient with stage 5 CKD)

(3c) I ended up having to get all his pills, order his pills, put them in the box for him, and make all those appointments. (P-32, spouse of a kidney transplant recipient)

Abbreviations: COVID, coronavirus disease; CKD, chronic kidney disease.

Table 4.

Similarities and Differences in Themes Between Patients and Care Partners

	Patient	Care Partners
Cognitive Process
COVID-19 as a health threat to existing kidney disease	Patients perceived that COVID-19 was a health threat to people with existing kidney disease.	Care partners perceived that COVID-19 was a health threat to people with existing kidney disease.
Emotional Process
Negative emotional response to COVID-19	Patients showed heightened anxiety and increased vulnerability and were concerned about their own health.	Care partners showed heightened anxiety and worry, but their negative emotions were related to concerns about the health of loved ones with kidney disease.
Interaction with Health care and Social Circles
Continued reliance and trust in the health care team	Patients felt like they could trust their health care team.	Not Applicable
Adequate health care Services	For those who needed routine care, patients experienced smooth transitions because of telehealth and ancillary services.	Some care partners felt that telehealth and laboratory services were sufficient to care for their loved ones.
Fragmented care with health care services	Patients who required multidisciplinary care and surgical procedures experienced fragmented care.	Care partners were unable to fully participate in health care duties and experienced difficulty helping their loved ones get the care they needed, particularly when multidisciplinary care and surgical procedures were required. Additionally, visitation restrictions hindered caregiving activities, leading to a feeling of helplessness.
Disrupted social support affected coping strategies and self-management	Patients who typically relied on social networks to cope experienced social isolation and increased emotional distress.	Not Applicable
Behavioral Process
Increase cautionary activities to maximize survival	Patients avoided going out and followed a strict cleaning protocol.	Care partners increased the intensity of their caregiving role and displayed hypervigilance in family care to keep their loved ones safe and healthy.

Patient-Related Themes

Theme 1: Cognitive Understanding That COVID-19 Is an Additional Health Threat to Existing Kidney Disease

All patients perceived that they were at a higher risk of health complications with COVID-19. This was marked by the cognitive belief that an infection with SARS-CoV-2, coupled with the presence of existing kidney disease, would worsen kidney disease progression and increase mortality. Patients also viewed themselves as more susceptible to death because of their weakened immune systems. (Table 2, Quotes 1a-f)

“I’m at even more risk because my immune system is suppressed.” (P-27, kidney transplant recipient, aged 50 years)

Theme 2: Heightened Anxiety and Vulnerability Driven by Perceived Risk

Patients’ emotional responses to the perceived risk of COVID-19 and their kidney disease intensified. (Table 2, Quotes 2a-d) For those who were already anxious about their kidney disease at baseline, the pandemic magnified their level of anxiety.

“My greatest fear of anything was COVID because I knew my immune system was really in bad shape.” (P-31, kidney transplant recipient, aged 50 years)

Theme 3: Behavioral Response and Coping Strategies Through Interactions With Health care Services and Social Circles

Subtheme: Trust and Emotional Reliance on the Health care Team

Participants who relied on their health care team to cope with their kidney disease pre-pandemic continued to rely on their physicians and nurses when the pandemic came. They emphasized their continued trust in their health care team, and derived comfort and/or security from their physicians and nurses. (Table 2, Quotes 3a-c)

“I trust him, so whatever he says, I will do and that’s the end of that.” (P-18, patient on in-center hemodialysis, aged 40 years)

Subtheme: Telehealth and laboratory service-facilitated self-management (behavioral aspect)

For patients with CKD not on dialysis, some participants reported a sense of continuity in their kidney care because of the availability of telehealth and access to laboratory services. (Table 2, Quotes 3d-g). These adaptive coping strategies allowed participants to continue health care follow-ups and medication refills without substantial disruption.

“They did the Telemed thing. I asked for extra medications in case I couldn’t get there.” (P-12, stage 4 CKD, aged 70 years)

Subtheme: Fragmented Care Leading to Challenges in Self-management

Although telehealth provided adequate care for some participants, others experienced delayed and fragmented care leading to a more challenging self-management experience. (Table 2, Quote 3h) This was seen in situations where multiple in-person visits and multispecialty care were required. Several participants reported that their kidney transplant was delayed because of COVID-19-related fragmented care. (Table 2, Quotes 3i-k)

“My [ureteral] stent was supposed to come out in 4 weeks, and it didn’t come out for like 2 months… it had to come out because you could get an infection.” (P-31, kidney transplant, aged 50 years)

Subtheme: Disrupted Social Support Affecting Coping Strategies and Self-Management

The cognitive and emotional burden of the pandemic led to changes in the way participants interacted with their social circles, affecting their usual coping and self-management strategies. Participants who usually relied on their social network to cope during the pre-pandemic period experienced social isolation and increased emotional distress. Many described the loss of connection not only with their family and friends but also with community support and health care providers. (Table 2, Quotes 3l and m)

“My family can’t see me. They only could bring stuff to the door. I can’t have company. The church is closed down, everything.” (P-29, hemodialysis, aged 60 years)

Theme 4: Increased Cautionary Behaviors to Maximize Survival

Based on their cognitive and emotional responses to CKD and COVID-19 (ie, perceived increased risk of morbidity and worries about increased mortality), many patients engaged in cautionary behaviors. These behaviors included the adoption of cleaning protocols, job changes, a reduction in visiting public places, fewer follow-up visits to clinics, and enhanced hand hygiene. (Table 2, Quote 4a-f)

“If you go out, then you have to have your mask, and like washing your hands and the social distancing and everything.” (P-16, hemodialysis, aged 80 years)

Themes Related to Care Partners

Theme 1: Hypervigilance in Family Care and Protection (Behavioral Response)

Care partners had a clear perception of the risk to their loved one’s health and showed fear and concern for their safety. These cognitive and emotional perceptions led care partners to adopt coping strategies, such as being extra careful, avoiding hospitals, and adopting strict cleaning protocols. (Table 3, Quotes 1a-c)

“Because we’re both having underlying conditions, although most people are being 99% careful, we’re being 100% careful.” (P-22, spouse of a patient on in-center hemodialysis).

Theme 2: Interaction With Health System and Adaptations to Self-Management

Subtheme: Telehealth Facilitating Self-Management for Some

During the pandemic, the experiences of care partners interacting with the health care system were variable depending on the complexity of patients’ health needs. For patients who only required routine care, their care partners felt that patients’ health care needs were adequately met through telehealth, allowing them to maintain their self-management routine. (Table 3, Quotes 2a-c)

“Her doctor sent somebody here to take blood. And she’s in contact with her medications and stuff. When she had to go in for a visit, I think they would take her.” (P-5, spouse of a patient with stage 4 CKD)

Subtheme: Major Disruption in Health care Services and Self-Management Challenges for Those With Complex Needs

On the other hand, care partners of patients with complex health needs experienced a major disruption in getting the care they needed because of the pandemic. (Table 3, Quotes 2d-f) This created barriers to their ability to support their loved ones’ self-management activities. (Table 3, Quotes 2g-j)

“We were thinking of setting up the fistula and catheter, and then the pandemic came and everything changed.” (P-8, son of a patient with stage 5 CKD)

In addition to disrupting health services, the pandemic led to the restriction of visits to medical facilities. Care partners felt they lost control and were unable to fully participate in health care duties. (Table 3, Quotes 2g-h)

“I took her to the primary doctor, and I could not even go in with her…. but she doesn’t understand what is going on because I am the one that is taking care of everything. I am the one that gives her the medication… I am the one that knows.” (P-37, daughter of a patient with stage 4 CKD)

Theme 3: Increased Intensity in the Caregiving Role to Facilitate Patient Self-Management

Drawing from the theoretical model, care partners’ cognitive and emotional responses to the perceived risks of COVID-19 led them to intensify their caregiving role to better support their loved one’s self-management practices. Out of concern for the safety of their loved ones, care partners took over activities such as buying groceries, picking up medications, and arranging for doctor’s visits. (Table 3, Quotes 3a-c) One care partner learned how to give erythropoietin shots at home to minimize exposure to the clinic.

“Because of the COVID, I asked them whether they could teach me [erythropoietin shots] because I don’t want to take him out to the house.” (P-34, son of a patient with stage 5 CKD)

Discussion

This study highlights the experiences and challenges to physical health, emotional well-being, and health care engagement among patients with advanced CKD and their care partners during the early COVID-19 pandemic. In alignment with the self-regulation model, our data suggest that both patients and care partners self-manage existing CKD based on their cognitive representations, emotional reactions, and interpersonal processes. Patients believed that COVID-19 would be detrimental to their disease and lives, leading to heightened anxiety. These effects were mitigated by the high levels of trust patients and caregivers displayed in their providers and the health care team. Those who required routine management felt that telehealth visits met their needs, whereas those with complex health care needs experienced fragmented care. Care partners experienced similar cognitive and emotional processes, but they worried not only about their own safety but mainly about the health of their loved ones.

Prior studies on the self-management of chronic conditions have mainly focused on individual behaviors, neglecting the interplay of cognitive and emotional representations, and the impact of social circles and health care services.^2,9,10,17, 18, 19, 20, 21 In what follows, we will discuss our results based on: 1) cognitive and emotional influences on self- management; 2) self-management behaviors and interactions with health care services and social circles; and 3) implications for clinical practice and research.

Leventhal’s self-regulation model suggests that beliefs and emotions influence self-management behavior in response to health threats.^22,23 Our study found that patients with advanced CKD believed that they were more susceptible to COVID-19 complications, resulting in heightened anxiety and vulnerability. Consequently, they engaged in self-preservation behaviors similar to those seen in other chronic disease populations during the pandemic.^11,30, 31, 32, 33 Prior studies of patients with advanced CKD have also shown that emotional responses and personal meaning affect self-management behaviors.34, 35, 36 Our findings, combined with previous research, highlight the importance of emphasizing cognitive and emotional aspects in patient education and when developing interventions for self-management support.

Care partners shared similar cognitive beliefs and anxiety about the impact of COVID-19 on their loved ones’ kidney health and mortality. Although patients focused on self-preservation, care partners adopted a more collective approach to keep everyone safe from COVID-19 and to facilitate care for their loved ones with advanced CKD. This distinction highlights the increase in care burden often taken on by care partners, including grocery shopping and patient advocacy, in addition to health care activities. Other studies also show that care partners exhibited increased vigilance regarding their family’s safety, took on additional caregiving activities, and experienced increasing caregiver burden.37, 38, 39, 40 Studies suggest that considering the needs of both patients and care partners is likely to be more effective in promoting self-management and improving health outcomes.^39,40

Our findings emphasize the crucial role of health care access and interaction in shaping cognitive representations and coping strategies in shaping self-management for patients with advanced CKD. Patients receiving routine kidney care benefited from telehealth, whereas those needing multispecialty care experienced fragmented health care and delays, a finding consistent with the literature.⁴¹ Inadequate health care access hindered participants’ self-management activities, like scheduling tests and procedures, causing helplessness. Similar findings were observed in research examining the impact of health care access disruption during COVID-19 among people awaiting kidney transplantation and those with chronic diseases.^34,42,43 Consistent with other research on health care access disruption during COVID-19, our findings underscore the importance of health care access for effective self-management. Potential strategies, like synchronous telehealth visits with multiple providers, are crucial for future pandemics and lockdowns.^44,45

Our findings suggest that patients and care partners who had high degrees of trust in their health care teams were better at adapting and performing self-management activities. They reported adequate access to medical information and confidence in contacting the health care team. Other studies supported the importance of trust in health care teams as a source of medical information.^46,47 Although trust is not a domain within the self-regulation model, it is a socio-cultural factor that may influence patients’ cognitive and emotional representation of their health care team. These findings emphasize the need for strong provider-patient connections and frequent communications,^8,48 particularly during crisis situations, as they are essential in providing reassurance and accurate medical information to support self-management.

Building on the self-regulation model and prior research on the role of social and family support in chronic illness management,^22,49, 50, 51 our study highlights the role of social interactions in shaping patients’ self-management behaviors. The negative impact of social isolation on self-management of chronic conditions during the pandemic aligns with other studies’ findings.^43,52 Our results underscore the need to consider social interactions and family dynamics when designing self-management interventions^18,43,53,54and explore alternatives such as virtual connections or socially distant gatherings.

Our study has several strengths and limitations. A strength of our study was the inclusion of patients and their care partners across the continuum of advanced CKD. Additionally, the qualitative study design allowed for a deeper understanding of patients’ experiences with health care access and the exploration of a complex range of emotions. However, our study also has limitations. This study was conducted in New York during the early peak of the pandemic in the spring and summer of 2020. Thus, the experience of the participants may not be representative of patients in different parts of the country and at a later time period of the pandemic, because of changes in the number of COVID-19 cases, resource capacity, and lockdown procedures. The study did not capture data on job and financial security, which might exacerbate emotional responses and influence coping actions. Patients with stage 3 and 4 CKD, in-center hemodialysis, and kidney transplants were grouped together. Because each group has different treatment requirements, we were only able to examine self-management challenges at a broad level. A larger sample size for individual groups would be necessary to understand the self-management challenges for each group. The participants were recruited from the Healthy Transitions program and thus had undergone kidney educational sessions and had access to nurses specialized in kidney care. It is notable that despite the participants having additional support through the Healthy Transitions program, the COVID-19 pandemic still made a large impact on them, highlighting the fact that additional supportive changes are required to maintain positive patient outcomes and disease self-management during periods of emotional, social, and health crises.

Our study findings hold important implications for future research and clinical practice in the self-management of CKD. Firstly, it is crucial to address both cognitive and emotional aspects of patients’ illness perceptions, as these factors drive self-management behaviors.^22,23 By recognizing and addressing patients’ beliefs and concerns, health care providers can develop tailored interventions that improve disease outcomes. Secondly, interventions should focus on enhancing communication and collaboration between patients and care partners, fostering a supportive environment for effective self-management. Lastly, ensuring health care access, particularly for patients with complex needs, is vital for effective CKD self-management. Additional support and resources can help navigate the challenges of managing chronic conditions, ultimately improving patients’ quality of life and health outcomes.

Our study highlights the multifaceted challenges faced by patients with advanced CKD and their care partners during the COVID-19 pandemic. By applying the self-regulation model, we have identified areas of intervention for self-management, including addressing cognitive and emotional responses to health threats, fostering communication and collaboration between patients, care partners, and the health care team, and ensuring health care access for those with complex needs. Future studies and clinical practice should build on these findings to enhance self-management for patients with CKD and their care partners.