Impacts of the COVID-19 Pandemic on Chronic Kidney Disease Care: Perspectives of Health Care Providers

Abstract

Background:

The COVID-19 pandemic significantly disrupted health care delivery; however, limited research attention has addressed the impacts of the pandemic specifically on renal-based health care.

Objective:

The aim of the study was to understand the health and psychosocial impacts of the COVID-19 pandemic on care delivery as well as on health care providers (HCPs).

Design:

A qualitative Interpretive Description approach was used.

Setting:

Participants were recruited from kidney care units in Alberta and Ontario, Canada.

Participants:

46 interdisciplinary HCPs providing kidney care during the pandemic participated in the study. Participants comprised pediatric (n=9) and adult (n=37) HCPs.

Methods:

Qualitative focus groups were facilitated. They were conducted using Zoom (Version 6.3.11).

Results:

Research results indicated substantial strain on patients and HCPs during the COVID-19 pandemic, including mental health difficulties. For HCPs, moral distress was experienced from witnessing negative impacts of the pandemic and care shifts on patients. HCPs were further deleteriously affected by staffing shortages, facility limitations due to care interruptions and resource gaps in health and community systems. Conversely, participants identified concurrent benefits from pandemic-related shifts such as the rapid transition to virtual care. While virtual care imposed challenges for physical assessment of patients, patient convenience and increased access to HCPs were noted. With training, support and experience, HCPs and patients reported an appreciation for communication offered by virtual care where appropriate. Supportive unit leaders and peer support from HCP colleagues were viewed to make this difficult experience of the pandemic more manageable. HCPs drew strength in being able to support their patients despite the difficulties of the pandemic.

Limitations:

Firsthand experiences of patients and families were not offered in this article, although their perspectives were elicited in another arm of this study. A more specific focus on pediatric versus adult systems of care, and the impacts of the pandemic on various disciplines, would add depth to understanding the unique impacts of the pandemic on various areas of care and across disciplines.

Conclusions:

Study results call for the advancement of clinical care and heightened consideration of HCP needs in a pandemic. Included recommendations are ensuring sufficient resources, prudent use of communication technology, and optimizing support to HCPs.

Introduction

COVID-19 had a substantial impact worldwide. The high risk of cluster infection, multiple comorbidities, and compromised immunity in patients with chronic kidney disease (CKD)/kidney failure rendered this population at heightened risk. The literature suggests deleterious health outcomes and emotional and socioeconomic impacts of the pandemic on patients. Stressful impacts for patients included social distancing and facility closures leading to a decrease in health care access. ¹ Patients with CKD, especially those on dialysis or with a kidney transplant, faced increased risk for severe COVID-19 outcomes, including acute kidney injury (AKI) and mortality. ² Usual support systems for CKD patients, including in-hospital and community care, were drastically disrupted, ³ reflecting various issues including staffing shortages (particularly nurses) and supply chain disruptions. ²

A national survey in the United Kingdom revealed that kidney services underwent system-wide adaptation, with significant variation in the implementation of change. While virtual consultations became nearly universal, other service areas such as outpatient services and peritoneal dialysis access had varied responses. ⁴ This study also indicated multiple impacts of staffing shortages, exacerbated by COVID-19 infection and redeployment, which further complicated service delivery. ⁴ A study involving nearly 250,000 individuals with CKD revealed marked reductions in health care utilization during the pandemic, with a notable decline in essential laboratory procedures and prescription medication adherence. ¹ Furthermore, most kidney centers in the United Kingdom reported reduced outpatient activity, with some suspending services, further complicating care for CKD patients. ⁴

Experiences of Health Care Providers

Several studies have amplified the experience of the pandemic for health care providers in kidney care. ² ,^5-13 Distress among HCPs was largely reported to be due to resource limitations and reductions. ⁶ Health care providers experienced anxiety due to the conflicting obligations of providing care amidst perceived health risk to themselves and their families. ⁶ Stress and burnout among HCPs were reported, including increased isolation due to quarantine. Staff shortages were stressful, and clinicians felt guilty about taking time away from work due to its impact on colleagues’ workload and well-being. ⁹ Decreased morale and symptoms of posttraumatic stress disorder (PTSD) were identified by dialysis staff. ¹¹ Impacts of the pandemic included intention of some clinicians to leave the field, along with social and psychological trauma. ² In the face of such challenges, pandemic-related impacts to nephrologist education were noted to be limited, with most respondents in one study feeling that their education was sustained, and they were ready for unsupervised practice. ¹⁰

Despite some emerging evidence, relatively little is known about the perspectives of HCPs specific to shifting kidney care offered in the pandemic and its impact on the health care workforce and system planning in and beyond the pandemic. Further understanding is needed for considering health care workforce needs and supports in the event of a future pandemic or other such large-scale crisis. We sought to ascertain interdisciplinary HCPs’ experiences in providing kidney care during the COVID-19 pandemic. The research question addressed is: What were/are the perceived health and psychosocial impacts of the COVID-19 pandemic on kidney care and HCPs? Reported findings in this article entail a sub-study of a larger study in which we also elicited the perspectives of patients and their caregivers about their experiences of the pandemic.

Methods

A qualitative Interpretive Description (ID) research design ¹⁴ was implemented, using focus groups consisting of HCPs from kidney care units in Alberta and Ontario, Canada. This approach identifies “on the ground” experiential findings with the aim of informing care considerations. It further offers analytic techniques to directly inform care processes in the aim of guiding practice and programming. ¹⁵ The research team made decisions about study methodology based on research aims and our commitment to amplify participants’ voices, including our hope to include disciplinary diversity. We drew on the COREQ Checklist ¹⁶ to consider key elements of the research team and methods. Notably, members of the research team bring experience in qualitative research, and research assistants were directly supervised by an experienced qualitative researcher (D.B.N.).

Multidisciplinary HCPs providing care to pediatric or adult patients with CKD or receiving kidney replacement therapy (KRT) during the pandemic were recruited to online focus groups. A convenience sampling approach was implemented, with the hope of a sufficiently diverse sample and data saturation in analysis. Six focus groups were facilitated by D.B.N. and a trained research assistant. They were convened later in the pandemic which allowed for participants to reflect on the course of the pandemic and its impact on their experiences. Focus group participants were invited to identify shifts in care during the pandemic, and their impacts on patients and families, and themselves as HCPs.

Focus groups lasted approximately 60 minutes, and were guided by a focus group guide, informed by the COVID-19 and health service planning literature. The guide was pre-tested prior to its utilization in focus groups, and field notes were taken during and immediately after each focus group.

The focus groups were audio-taped, transcribed verbatim and subjected to qualitative analysis, assisted by data management and analysis software (NVivo 12). Primary data analysis began immediately upon completion of all focus groups. ¹⁷ Analysis of initial focus group data informed the development of a foundational analytic framework, from which coding, categorization of codes, and theme generation emerged. A “data collection-to-analysis” approach was undertaken, including line-by-line coding, axial coding and selective coding. ¹⁷ This analytic approach permitted rapid categorization of codes for theme generation and the emergence of working hypotheses for subsequent data analysis. Two data coders and analysts (E.H. and D.B.N.) independently reviewed the data, and met to review emerging codes and themes. It was perceived that consensus was achieved in the analysis. Participant quotations are presented in this article to illustrate emerging themes. Generally, these themes were consistently conveyed across the dataset.

To ensure analysis accountability and quality, trustworthiness, as per qualitative inquiry methods, comprised member checking, peer debriefing and an audit trail.^17-20 Prior to study commencement, research ethics approval was received (University of Calgary Conjoint Faculties REB22-0815; University of Alberta Ethics ID Pro00121703; Lawson Health Research Institute RMS22-89688435-3), and operational approvals were obtained from all health care facilities where data were collected.

The Sample

The sample comprised 46 HCPs, including pediatric and adult HCPs across 3 centers in Alberta and Ontario, Canada. In pediatric care, participants comprised 5 nephrologists and 2 allied health care providers. In adult care, participants comprised 2 nephrologists, 21 nurses, 8 social workers, 2 pharmacists, 3 dietitians, 1 dialysis educator, 1 transplant coordinator, and 1 cultural health broker. Mean years of experience of HCPs was 12.17, with a median of 12 years. The range of years of experience spanned from 1 to 32 years. Based on this sample, and specifically reflection on sample diversity and representation, we determined that we achieved a sufficiently diverse sample. Also, thematic saturation was deemed to be achieved.

Results

Health care providers reported extensive impacts of the COVID-19 pandemic on health care and health care providers, resulting from workforce shortages, insufficient protective personal equipment (PPE), facility and resource limitations, and interrupted patient supports such as transportation to dialysis and gaps in community-based primary care. There was general consistency across disciplines and between the 2 regions represented, although we did not specifically elicit disciplinary or regional variation.

Program and regional care were perceived by HCPs to be negatively impacted by challenges in communication to patients about care issues, visitation restrictions, and surgery and procedure (eg, catheter placement) cancelation or delay. Additional shifts comprised the rapid emergence of virtual care due to restrictions in face-to-face engagement. Work from home policies were rapidly developed, and senior leadership variably sought ways to support frontline HCPs. Perceived negative impacts of the pandemic on HCPs included a sense of personal vulnerability relative to health and safety, staff shortages and thus heightened workload, moral distress in seeing patients suffer, strained mental health support, and a sense of isolation. Patient shifts were described to include mandatory masking and swabbing protocols related to hospital entry as well as visitation restrictions, lack of community supports, and perceived patient isolation. Below is a summary of reported pandemic impacts, with examples of corroborating text quotes from the data.

Impacts of the Pandemic

Staffing Gaps

The most frequently expressed factor impeding the ability for HCPs to optimally care for their patients during the pandemic was staff shortages. Participants reported that pre-existing staffing issues prior to the pandemic, were made substantially worse by staff having to stay home if experiencing any potential COVID-19 symptoms or due to a lack of childcare. A HCP recounted challenges in caring for patients being treated with hemodialysis due to staffing shortages:

As our staff began to also have illnesses, and we were short-staffed and couldn’t safely offer dialysis for a certain amount of patients, how do we triage that and how do we navigate that across the city?

Another frequently encountered gap was a severe lack of support for patients within the community, especially transportation services and access to primary care providers. Transportation of patients to and from hemodialysis was reported as a challenging issue even before the pandemic, due to financial costs to patients for this service. The pandemic resulted in very few available transportation services. This was made worse if a patient had symptoms of COVID-19 or a confirmed infection:

Transportation has always been . . . one of the main barriers for patients to access dialysis . . . . But at the time of the pandemic, the community services that provide subsidized rides and their volunteers were not working . . . . Nobody was volunteering to drive patients.

A related concern reflected costs incurred by dialysis patients, with implications on care and decisions about care. For example, a HCP stated, “[A] patient was spending CA$40,000 from his retirement funding. In another case, patients reportedly made decisions about whether or not to start lifesaving dialysis based on the financial constraints of transportation.” Another participant described a patient who had stated, “I won’t go on dialysis because I won’t be able to afford it.,” and another who didn’t receive dialysis, reportedly stating, “I don’t have anybody to transport me there.”

Reflecting on further gaps in care and their perceived impacts on patients, HCPs described the frequent inability of their patients to access primary care services in the community, often resulting in unmet chronic care or daily living needs, and the progression of diseases other than their CKD. Reflecting on care gaps in the community, a HCP stated, “The physicians are still not seeing their patients regularly . . . family doctors are overloaded.”

Facility and Resource Limitations

Facility issues related to the pandemic were described to negatively affect patient care by delaying medical procedures or canceling surgeries to deploy resources to other areas. The lack of isolation rooms, especially in hemodialysis units, meant that sick patients were often only separated from the rest of the unit by curtains, thus potentially risking infection spread.

Numerous communication challenges were reported. At times in the pandemic when there were PPE shortages, the effort to conserve PPE motivated HCPs to enter patient rooms only when necessary in order to avoid extra donning and doffing of these scarce resources, leading to less frequent communication between HCPs and patients. Restricted visitation in hospital was perceived to negatively impact patient care and experience in numerous ways. In particular, patients treated with KRT and those reliant on others to help them understand or remember health information or translate, were increasingly left on their own to ascertain and navigate care. Continual masking was thought to impede individuals with hearing loss, with voices muffled and speech less clear. Such challenges reportedly also existed during virtual care visits, especially over the telephone.

The lack of nonverbal communication in virtual care led HCPs to surmise whether or not patients were understanding what was being discussed, and in many cases, HCPs missed out on patients’ expressed opinions about their treatment plans. A HCP noted, “[A significant frustration was] being on the phone with people, but not being able to see their faces. You don’t know if they disagree with what you’re saying, or [if] they don’t understand what you’re saying . . . .” Video conferencing was reported to improve the nonverbal communication challenges that were particularly noted in telephone conversations.

Use of Virtual Care

The transition to virtual care posed multiple challenges for HCPs and patients. The inability to perform a physical exam was a frequently expressed concern, impacting the ability to confidently diagnose and treat patients. Health care providers instead relied on patients to describe their symptoms and some physical findings, but several thought that some patients under-reported symptoms due to becoming accustomed to symptoms and/or their condition, which at times delayed treatment such as the start of dialysis. A HCP reflected,

I saw [patients], and they even looked terrible now compared to [earlier] . . ., but the patient still tells you, “I’m okay . . . . I’m getting by,” because people don’t want to start [dialysis], and they’re used to their symptoms. So, it’s like they almost forget what it’s like to be sick, and it might take somebody else who hasn’t seen them for a long time to go, “whoa! No, this is a change.”

Along with self-report, a general assessment of the patients’ appearance was possible through video conferencing which was preferred by some HCPs. Yet barriers to effective communication between HCPs and patients reportedly arose with virtual care, such as difficulty understanding each other particularly on the telephone due to language barriers, lack of nonverbal communication and impaired hearing. This was reported as worse with telephone visits and better with videoconferencing. Despite videoconferencing reportedly contributing to better medical assessment and communication, it was thought to introduce technological challenges for both HCPs and patients. A lack of optimal equipment (hardware and software) and technological familiarity on the part of the patients were commonly described.

Providing care specifically to pediatric patients entailed some similar concerns, specifically the lack of ability to examine the child or adolescent. This was further compounded by the patient often not being present in the virtual appointment due to attendance at school. Anthropometric and blood pressure measurements crucial in the care of children with kidney disease, were described to often not be available to HCPs in virtual care visits. Furthermore, HCPs expressed concern that children and youth were often not given the opportunity to convey questions or worries to the HCP nor learn and understand more about their disease, particularly if not present in an appointment:

The proportion of phone calls or Zooms that I did with the patient actually not being present was actually a lot more than what we would expect. I don’t know how that correlates to the adult world, but it seems kind of odd when you’re reviewing a patient that is in school or at their soccer practice, and you’re just chatting with the parents and it makes me wonder about the patient experience and their education around disease, understanding what’s going on with their health, and why we’re making certain changes.

Factors Impacting the Mental Health of HCPs

Health care providers conveyed substantial challenges to their own well-being due to pandemic circumstances and restrictions. For several, the pandemic incurred continual stress related to their own health and safety as well as that of their family. There was a fear of contracting and spreading illness to loved ones, made worse by inadequate or unavailable PPE, particularly early in the pandemic:

I am still going into work every day, and am on the floor with all of our COVID patients, and literally I would be on my way to work every day with tears pouring down my face, and then you get there and you get yourself together, and you go in and do your job, and you pray to God that you’re not going to bring something home to your children. So it’s just such a heavy emotional toll.

Shortages of PPE at particular junctures of the pandemic in some regions, required HCPs to use the same mask for an extended time, and wear gowns labeled “not for medical use.” Reflecting on the mask shortage at such a point in the pandemic, a HCP poignantly commented:

I remember having a patient, and unfortunately she was passing away. I was holding an iPad to her face so her family could say goodbye to her, and I was like, I can’t cry, because if I cry, I’m going to soil my mask and that’s the only mask I had for the whole week.

Health care providers experienced ongoing stress at work with staffing shortages and increased workloads along with the constant barrage of new information and policies related to COVID-19. Some reported significant moral distress due to their perception of being restricted from providing optimal care to patients amidst staffing shortages and a lack of in-person assessments, and concurrently witnessing the perceived suffering of patients and families due to the isolation created by restrictive visitation policies.

Another common theme was the lack of support available to HCPs related to deleterious impacts on mental health. Health care providers were isolated from their colleagues through distancing policies as well as isolation experienced when away from work. Reflecting on these challenges, a HCP stated,

I just can’t reconcile that. I can’t . . . I mean when you’re with people in a hospital, and you see their suffering and their loneliness, it’s just . . . yeah, to not let anyone in . . . is inhumane to me, like it would have to be a pretty, pretty dire situation.

Perceived Impacts on Patients

Based on their observation and perception, HCPs believed that patients experienced adverse mental health effects related to the pandemic and their health care during the pandemic. They stated that patients had expressed being tired of COVID-19 symptom questionnaires, uncomfortable swabs and masking policies. Health care providers generally stated that visitation restrictions were among the most detrimental policy shifts to patient care, particularly in inpatient care, clinics and hemodialysis units. HCPs were concerned about patients being isolated and having limited access to mental health supports. Reflecting on restrictive visitation restrictions and their negative impacts, a HCP noted,

I found that really hard, the idea of people dying alone is awful, like you live your whole life. You think about who will be with you when you die. I think a lot of people think about that. You know, your funeral etc., and you know, to be alone in the hospital. Death during a pandemic is tragic.

Factors Facilitating Care

Despite reported challenges, the transition to virtual care was generally appreciated for facilitating health care with as little disruption as possible. Patients remained in contact with their nurses, physicians, dietitians and social workers virtually. Allied HCPs reported that flexible work from home options and virtual care allowed them to provide ongoing care even when faced with mild illness or family care obligations that impeded their ability to be present in the health care facility. With experience and technical assistance to support video conferencing, many HCPs and patients (based on HCP observation) came to appreciate the flexibility of virtual care, where appropriate. Virtual care reportedly improved the quality of care for some patients by allowing them to reduce travel time and related expenses as well as spend less time away from home and work.

Supportive leadership personnel and colleagues were reported to be an important resource for HCPs, and specifically were thought to help navigate difficulties in care provision to patients. Nurses repeatedly commented that strong and dedicated support from their manager or charge nurse was very helpful. Specialized personnel to support patient services such as Indigenous community navigators and staff specifically trained to help with virtual care were identified as facilitators to managing care during this time.

Promoting Mental Health Wellness

Health care providers repeatedly noted personal mental health benefits from strong ties with colleagues. They also deeply valued helping patients, which reportedly yielded a sense of personal fulfillment. Other factors that helped address mental health burden were sufficient PPE, the availability of vaccines, and being able to work from home when possible.

Health care providers speculated that services offering support to isolated patients were most helpful to patients’ mental health. This included in-hospital services such as social work, spiritual care and nursing, but also informal peer support from other patients (eg, in hemodialysis units). HCPs felt that socialization was key to helping patients remain emotionally and mentally well. Accordingly, HCPs advocated for support resources to assist in navigating the challenges of a pandemic both for patients and themselves.

Discussion

Our findings identify HCPs’ perceptions of substantial pandemic strain both among patients and HCPs. These findings inform patient care delivery and workforce support in adverse times such as a pandemic. Beyond extensive challenges and negative impacts on HCPs, facilitators of coping and resilience were conveyed, including collaboration, managerial support to staff, communication technology, support from colleagues, and virtual care options.

Health care providers were variably left to fend for themselves in managing their distress, yet relational leadership, collegiality and online training and support, were crucial to nurturing well-being. Considering the care needs of patients and HCPs emerged as critical, as did community-based services (eg, transportation and primary care), especially for patients with social determinant of health barriers (eg, lower socioeconomic status, rural dwellers requiring transportation to hemodialysis or clinical follow-up in a distant locale).

An unexpected and enduring benefit of the pandemic was the increased use of virtual care. This modality of communication in care delivery was appreciated by participants for what they perceived as benefits to patients and families such as saving time and travel cost. Consistent with the literature, virtual care offers a helpful option, although in-person care generally is preferred for complicated or urgent medical situations. ⁵ The relationship between the HCP and patient does not appear to be adversely affected by a virtual modality in care provision, particularly when the care relationship is established; however, establishing new relationships with only virtual care is noted as more challenging. ⁵

Heyck Lee et al ⁷ examined physician experiences of telephone-based consultation, and determined that this approach improves access to care, but also poses challenges for patients with language barriers or hearing impairment, and may decrease connection between HCPs and patients, and impede physical examinations. Consistent with identified concerns in our study, virtual care is reported to heighten risk for assessment inaccuracy, communication difficulty, and impeded safeguards to confidentiality. ⁸ Future examination of when and how to optimize virtual care is warranted.

Recommendations from the study comprise proactive planning to ensure sufficient pandemic preparedness including staffing, resources including PPE, support, flexibility, work from home options, and ethical considerations (eg, attention to the social determinants of health in care). Considering the needs of HCPs on the frontline and proactive planning for sufficient support to HCPs are integral, and invite accessible emotional support. Furthermore, community care, which was markedly constrained during the pandemic, warrants increased investment and capacity-building as well as planned contingencies and guiding principles in circumstances such as a pandemic (eg, access to care, patient visiting options, transportation to dialysis).

Limitations

We explored pandemic impacts within renal pediatric and adult health care, in various renal care modalities, and across multiple regions. Deeper granularity in focus on specific modalities of care and population group (eg, pediatric and adult), and a greater number of represented regions likely would have yield more nuanced findings relative to population, treatment approach, and specific policy implications. By the time the study was implemented (mid 2022 to late 2023), the initial waves and intensity of the pandemic had eased, with restrictions having lessened. Despite the easing of restrictions at study commencement, we suspect, given the profundity and substantial duration of the pandemic, that memory distortion is not a significant concern. In fact, this time delay may have allowed needed time for participants to reflect on their experiences. To further advance learning for CKD care, exploration of the firsthand experiences of patients and their family caregivers is needed, and as noted earlier, is the focus of additional work by this team.

It is recognized that various health systems and jurisdictions within Canada (and beyond) uniquely determined policy responses, and thus likely experienced varied pandemic impacts. Accordingly, the implications of the pandemic in health systems beyond those represented in this study warrant examination. Determining key lessons learned and recommendations emerging from the COVID-19 pandemic is critical for optimally preparing for the potentiality of another such catastrophic public health event. This research is particularly important given the need for frequent patient visits to a hospital/clinic for life saving therapies such as dialysis. Focusing on workforce needs and service requirements across treatment modalities in pediatric and adult care is strongly recommended. A more granular review of regional approaches and their outcomes, and specific disciplinary impacts, importantly may inform practice and policy recommendations.

Conclusion

The pandemic imposed considerable impacts on health care and those providing that care, which offer lessons for future pandemic planning. Addressing care gaps and providing sufficient support to HCPs emerge as critical priorities for pandemic planning, response, and recovery.