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Abstract
Objective To describe the experiences of nephrologists on caring for patients undergoing in-centre haemodialysis during the COVID-19 pandemic in Latin America.
Design Twenty-five semistructured interviews were conducted by Zoom videoconference in English and Spanish languages during 2020 until data saturation. Using thematic analysis, we conducted line-by-line coding to inductively identify themes.
Setting 25 centres across nine countries in Latin America.
Participants Nephrologists (17 male and 8 female) were purposively sampled to include diverse demographic characteristics and clinical experience.
Results We identified five themes: shock and immediate mobilisation for preparedness (overwhelmed and distressed, expanding responsibilities to manage COVID-19 infection and united for workforce resilience); personal vulnerability (being infected with COVID-19 and fear of transmitting COVID-19 to family); infrastructural susceptibility of dialysis units (lacking resources and facilities for quarantine, struggling to prevent cross-contamination, and depletion of personal protective equipment and cleaning supplies); helplessness and moral distress (being forced to ration life-sustaining equipment and care, being concerned about delayed and shortened dialysis sessions, patient hesitancy to attend to dialysis sessions, being grieved by socioeconomic disparities, deterioration of patients with COVID-19, harms of isolation and inability to provide kidney replacement therapy); and fostering innovative delivery of care (expanding use of telehealth, increasing uptake of PD and shifting focus on preventing syndemics).
Conclusion Nephrologists felt personally and professionally vulnerable and reported feeling helpless and morally distressed because they doubted their capacity to provide safe care for patients undergoing dialysis. Better availability and mobilisation of resources and capacities to adapt models of care, including telehealth and home-based dialysis, are urgently needed.
- dialysis
- COVID-19
- qualitative research
- chronic renal failure
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
Semistructured interviews were conducted with nephrologists purposively sampled across nine countries to obtain in-depth and diverse data on their perspectives on the impact of COVID-19 on caring for patients undergoing dialysis in Latin America.
The range of perspectives and challenges obtained will inform the need to improve access to care during the COVID-19 pandemic.
All participants were from Latin America, and thus the transferability of the findings beyond this region is uncertain.
Introduction
The SARS-CoV-2-related disease (COVID-19) pandemic has disrupted, delayed and impeded access to treatment among individuals with chronic illness, including patients with kidney failure undergoing maintenance dialysis.1 For patients undergoing long-term dialysis, their risk of acquiring COVID-19 is estimated to be five times higher, and they are four times more likely to die than the general population.2
The pandemic has seen major reconfiguration of care in many health institutions to manage the increased demand to care for people with COVID-19. Unfortunately, this has inadvertently shifted resources away from the care of patients with other medical conditions, including kidney disease. Dialysis units have been faced with unprecedented challenges. For patients undergoing in-centre haemodialysis (HD), physical distancing within the unit and during transportation can be difficult.3 Clinicians caring for patients undergoing dialysis have encountered a shortage of personal protective equipment (PPE) and could not access quarantine facilities for patients with infection.4 Preventing infection in dialysis facilities is particularly challenging in resource-limited settings. For example, guidelines recommend against that the reuse of dialysis filters5; however, this remains to be common practice in some resource-limited settings, including in Latin America. Such regions also contend with an increased risk of SARS-CoV-26 because of high-density housing and large socioeconomically disadvantaged communities.
However, little is known about nephrologists’ experiences providing care to patients undergoing dialysis, particularly in low-resource settings with high rates of COVID-19 infection, including Latin America. This study aims to describe nephrologists’ perspectives on providing care to patients undergoing dialysis during the COVID-19 pandemic to inform strategies for improving the quality and safety of care for patients undergoing dialysis.
Methods
We used the Consolidated Criteria for Reporting Qualitative Health Research7 (online supplemental file 1).
Supplemental material
Patient and public involvement
Patients were not involved in this study as this study aimed to describe the perspectives of clinicians.
Participant selection
Nephrologists caring for adults undergoing dialysis, including HD and peritoneal dialysis (PD), in Latin America, irrespective of years of clinical experience in dialysis settings, were eligible to participate. We used purposive sampling to include participants across a diverse range of ages, gender, years of clinical experience and countries. Nephrologists were identified through our professional networks (Sociedad Latinoamericana de Nefrología e Hipertensión) and invited by email to participate. Participants could nominate other colleagues to participate.
Data collection
The interview guide was developed based on the literature and discussion among the investigators (online supplemental file 2). Two authors (AMG and AH) conducted semistructured interviews in English or Spanish language (as preferred by the participant) by Zoom videoconference from June 2020 to November 2020 until data saturation. Author AMG, a PhD candidate with experience in qualitative studies, had practised as a dietitian in dialysis units in Chile. Her interest in the impact of COVID-19 and knowledge of the health system informed the conceptualisation of the research, design, data collection and analysis. The interviews were recorded and transcribed in English and Spanish.
Supplemental material
Data analysis
Using inductive thematic analysis and drawing from the principles of grounded theory, AMG performed line-by-line coding of the transcripts, used constant comparison within and across transcripts, and inductively identified preliminary concepts. Similar concepts were grouped into themes and subthemes, and patterns were identified among themes. The interview transcripts were imported into HyperRESEARCH V.4.0.1 (ResearchWare, Randolph, Massachusetts, USA). Investigators AH, EL, SC and AJ reviewed the themes to ensure that the analysis captured the full range and depth of the data obtained. We conducted member checking, whereby the preliminary findings were sent to participants for comment and any additional insights were integrated into the final analysis.
Results
Participant characteristics
All 25 invited nephrologists (100% response rate) participated from 25 centres across nine countries (Chile, Colombia, Uruguay, Guatemala, Peru, Bolivia, Brazil, Argentina and Mexico) (table 1). Of the participants, 8 (55%) were women; 17 (59%) were from countries where English was not an official language; and 9 (18%) were from low-income and middle-income countries. The average duration of the interviews was 35 min (ranging from 30 min to 42 min). Nine participants responded to the preliminary findings and confirmed that the findings captured their perspectives.
Participant characteristics (N=25)
Themes
We identified five themes: shock and immediate mobilisation for preparation, personal vulnerability, infrastructure susceptibility of the dialysis unit, helplessness and moral anguish, and promotion of innovative provision of care. The respective subthemes are described as follows, with illustrative quotations provided in table 2.
Selected illustrative quotations to support each theme
The conceptual links are shown in figure 1.
Thematic schema. PD, peritoneal dialysis.
Shock and immediate mobilisation for preparedness
Overwhelmed and distressed
Participants were overwhelmed and unprepared for the sudden and severe consequences of COVID-19 and were distressed by the high mortality rates in patients undergoing dialysis. They faced ‘chaos’ and a ‘tsunami of demands’ in making rapid changes to minimise the risk of infection in the dialysis setting and to accommodate an unexpected increased ‘demand’ in the number of patients requiring acute dialysis. It was stressful and exhausting having to constantly remain ‘alert’ in facing such a medical emergency.
Expanding responsibilities to manage COVID-19 infection
Some took on additional responsibilities and cared for non-dialysis patients with COVID-19 and thus felt pressure to acquire high-level skills for treatment they were less familiar with, for example, oxygen therapy and mechanical ventilation: ‘In hospitals, they throw you to the wolves without you knowing how to provide oxygen; they tell you: just do it’. For some, having to administer treatments for managing COVID-19 was ‘new’ and challenged their ‘comfort zone’.
United for workforce resilience
Dialysis centres faced a critical shortage of staff; some nephrologists were unable to work because their older age placed them at increased risk for worse outcomes if infected with COVID-19, and other nephrologists were unavailable because they strived to work on ‘the front line’. Younger participants were committed to help because they believed they had a lower risk of developing severe disease. Confronting the pandemic together cultivated team solidarity, and they were conscious of supporting each other: ‘Every day we would discuss, talk, and approach the health staff, with questions like how you are doing, how are you, or what you need?’ Some chose to prioritise their clinical responsibility to patients over their own personal commitments: ‘I put aside crucial personal things temporarily because this is my job’.
Personal vulnerability
Being infected with COVID-19
Participants were terrified about their own risk of being infected with COVID-19 and tried to stay healthy and said they were ‘fighting and resisting’ the virus. They stated, ‘it was very uncertain, we are waiting to get sick, we don’t want to expose ourselves’.
Fear of transmitting COVID-19 to their family
Some were worried about bringing the virus home and infecting family members. That was their ‘primary concern’ because they could not predict if their family would be exposed to severe illness and even death from COVID-19. Some noted their colleagues suspended clinic work because they had vulnerable family members, or those who continued to work chose to isolate themselves from their family: ‘I sent my family away from Santiago these 5 months, because it was very intense’.
Infrastructural susceptibility of the dialysis unit
Lacking resources and facilities for quarantine
Participants despaired for patients who had COVID-19 as there were insufficient quarantine facilities in the dialysis unit to meet the demand. They could not isolate patients with COVID-19 from their family members. In some countries, participants felt helpless as dialysis units were ‘running out of space and collapsed’. Participants were devastated as their patients could not access dialysis and died at home.
Struggling to prevent cross-contamination
At the onset of the pandemic, participants turned much of their attention and resources to preventing exposure to COVID-19. It was challenging to enforce social distancing, avoid ‘crowds in the waiting room’, and for staff and patients to wear PPE. Participants noted that patients took their masks off in the vehicle in which they were transported to and from the dialysis unit: ‘if one patient becomes infected, he or she will infect the entire van because they spend more than an hour and a half or two hours being transported by the van in a closed space’. In some countries, reusing dialysis filters were no longer permitted: ‘here we reuse the dialysis filters. That procedure had to be suspended also when patients had coronavirus’.
Depletion of PPE and cleaning supplies
Some faced an insufficient supply of PPE for patients and clinicians: ‘you cannot give everything to everyone because there is a lack of resources’. It was stressful to ration supplies between patients and clinicians: ‘we wanted to put masks on our patients but initially our hospital did not give us permission to do so because they were very afraid that they did not have enough supplies for everyone’.
Helplessness and moral distress
Forced to ration life-sustaining equipment and care
Some had to make harrowing decisions about rationing life-sustaining treatments, in particular dialysis and mechanical ventilation. One participant explained, ‘I would have made the effort to offer dialysis to two critically ill patients with COVID, but I gave up on offering dialysis. They had no chance of receiving dialysis because there was no dialysis machine’. They were also forced to allocate ventilation to patients undergoing dialysis in the hospital setting, who they judged to have a better prognosis. They had to do ‘war medicine’ and ‘tried to distribute the few resources that were available as best as they could’. Some felt judged by others, and the dire consequences on patients caused anguish and guilt: ‘The tremendous challenge of playing God, in the sense of who lives and who does not live, who has the right to be connected or not’.
Concerned about delayed and shortened dialysis sessions
Participants were concerned about having to reduce the dialysis prescription for patients to account for the increased time taken to implement strict cleaning protocols due to COVID-19, also to ensure that other patients could undergo dialysis: ‘I had six patients who had to dialyze, and you had only one machine, and there you had to cut dialysis time’. Dialysis units were understaffed because staff members had contracted COVID-19 or were unable to work: ‘I have less staff to dialyze people, and I have to dialyze shorter’. Some tried to refer patients to private dialysis units, but those units could not accommodate additional patients.
Patient hesitancy to attend dialysis sessions
Participants explained about some hesitancy by patients to attend in-centre dialysis because of fear of being infected with COVID-19, which caused worry, helplessness and frustration: ‘This morning, the largest public hospital adapted an area to dialyze COVID-positive patients on a fourth shift. Therefore, this morning patients went on a hunger strike at the entrance door. They were not letting patients enter because they said they were going to infect them’. They stated that patients were afraid of the possibility of dialysing near patients with COVID-19.
Grieved by socioeconomic disparities
Participants were saddened that patients from low socioeconomic backgrounds were more disadvantaged because of COVID-19: ‘many patients are do not work and receive miserable pensions. They cannot leave their home and they face difficulties accessing food’. They explained that ‘where the poorest patients are dialyzed, it is shocking to see how patients arrive at the emergency room and cannot access a hospital bed, and many of them end up dying’.
Deterioration of patients with COVID-19
Some participants did not expect COVID-19 would have severe and ongoing symptoms and complications and observed how dialysis patients were in a severely weakened state after being infected, ‘with much sarcopenia that caught my attention’. However, participants commented that ‘rehabilitation is what we least think about now because we have to prepare for the waves that come next’.
Harms of isolation
Due to the COVID-19 protocols, the dialysis sessions were described as ‘a bit depersonalised’. Health professionals had to wear a mask and glasses, and participants mentioned that patients ‘had no idea with whom they were talking to’. Participants sought to provide emotional support because the ‘patients were very alone’, and for patients with COVID-19, ‘there were no visits at any time, and every day for them was the same of others’. They noticed that patients were ‘quite depressed’ and that some patients ‘knew they were going to die’.
Inability to provide transplantation therapy
In some countries, participants explained that their kidney transplantation programmes were suspended during the COVID-19 pandemic. Participants reported they did not have beds for transplantation because ‘they were all used by COVID patients’ and ‘there is a long list of dialysis patients waiting for a transplant’. Likewise, patients with kidney transplantation who come to be monitored with some frequency stopped attending hospitals or clinics. They noticed that patients stopped their following up: ‘COVID-19 devoured them’. Participants highlighted having no idea about where their transplant patients are, how they are doing or if they have controlled their immune response: ‘I have a considerable fear of what will happen to them’.
Fostering innovative delivery of care
Expanding the use of telehealth
Participants remarked that telehealth ‘had to be implemented rapidly’ because of the pandemic. Participants described how telehealth ‘has allowed us to continue working remotely in hemodialysis’s units. This is good because we can conduct nephrology consults during the COVID-19 pandemic’. Telemedicine provided them a safe, effective and efficient way of communication: ‘patients send us messages when something happens, and don’t have to travel more than 800 kilometers to see the doctor’.
Increasing uptake of PD
Some participants expected that there would be an increase in the number of patients who choose PD over HD during the pandemic: ‘We see less complications with peritoneal dialysis than with hemodialysis’. They recognised that for patients undergoing PD, ‘the risk is minimal’ and could be managed through telemedicine.
Shifting focus on preventing syndemics
Participants explained that patients with comorbidities were at an increased risk of severe infection: ‘patients with chronic disease, including those with kidney disease, suffer the most when developing complications from COVID-19 infection’, and that these clustered within socially disadvantaged and vulnerable groups, and thus had concerns about inequity. They stated that ‘a relatively large number of dialysis patients have died in the world, particularly in our Latino communities’. They urged for a focus on addressing the ‘syndemic’; “this world is treating the pandemic’s symptoms, and they are not looking for the causes of this as a syndemic”; and called for a more comprehensive approach, encompassing education, employment, housing, food, and the environment – “a comprehensive vision is needed if we are to protect the health of our communities.”
Discussion
Nephrologists caring for patients undergoing in-centre HD in Latin America during the COVID-19 pandemic felt overwhelmed. They had to suddenly mobilise resources to prevent the dialysis patients’ and others’ exposure to COVID-19 and simultaneously manage individuals who were COVID-19 positive. A major challenge was contending with the susceptibility of dialysis units to cross-infection, particularly with the lack of resources for quarantine and PPE supplies. They felt personally vulnerable in being exposed to COVID-19 infection, and the flow on risks to their own families. Having to ration life-sustaining treatment and being unable to provide adequate dialysis and witnessing the trauma of patients being isolated compounded a sense of helplessness and moral distress among nephrologists. The challenges provided an impetus for nephrologists to change the delivery of care with a focus on increasing the use of telehealth, home-based modalities, and preventing syndemics.
The findings were broadly consistent across participants. Nephrologists were concerned about the susceptibility of dialysis units including the lack of PPE, resources for quarantine, and cross-contamination. There appeared to be some differences in the availability of resources at the clinic in which they worked, which was determined by the resources, and the roles in which they had to take on. Due to the risk of infection, some participants reported suspending some procedures such as the reuse of filters, a common practice in dialysis centres in Latin America. They felt helpless about the socioeconomic disparities as patients in low resource areas faced substantial barriers to accessing healthcare and had worse outcomes.
While there are very few studies on nephrologists' perspectives on the care of patients undergoing dialysis during the COVID-19 pandemic, similar challenges have been identified across other medical disciplines. Clinicians have described the angst of having to ration8 and withhold treatment and experienced tremendous physical and psychological burden. In studies conducted across China, the USA, and Europe, clinicians have reported increased anxiety, depression, and symptoms of post-traumatic stress disorder.9 Studies in the United States have also identified that Latinx communities are severely disadvantaged in terms of accessing healthcare, and patients were afraid of unemployment, eviction, and inability to protect themselves from COVID-19 as they lived in high-density housing.10 However, specific to the context of dialysis, nephrologists were particularly concerned about patients undergoing inadequate dialysis due to the shortened sessions, patient hesitancy to attend dialysis, preventing infection in dialysis units, and suspension of transplantation programmes, further increasing the waiting lists in some Latin American countries.
Compared with the perspectives of clinicians, patients undergoing dialysis and caregivers have also reported feeling distressed and vulnerable in dialysis settings during the COVID-19 pandemic, particularly if they observed inadequacies and inconsistencies in infection control practices.11 Patients undergoing dialysis reported that they were concerned about the cancellation of follow-up appointments as they could not monitor their blood results, missed dialysis sessions, and were anxious about risk of complications such as hyperkalaemia.12 13 However, patients have emphasised concerns about the potential loss of or delay in undergoing a kidney transplant.14
Our study generated comprehensive insights about nephrologists’ perspectives on caring for patients undergoing dialysis during the COVID-19 pandemic. We conducted interviews until data saturation and used member checking and investigator triangulation to ensure that the findings captured the data collected. However, there are some potential limitations. The participants did not mention the impact on caregivers. Some findings suggest that family caregivers of patients undergoing in-centre HD should be considered by the dialysis team to develop educational and supportive interventions to meet family caregivers' needs, mitigate emotional distress, fears, and concerns, and prevent caregiver burden during the COVID-19 pandemic.15 All participants were from Latin America, and thus the transferability of the findings beyond this region is uncertain.
The prevention of “syndemics,” defined as a synergistic interaction between multiple epidemics or disease clusters (ie, SARS-CoV-2 infection and non-communicable diseases)16 17 that exacerbate worse health outcomes, was also identified as a priority. Nephrologists recognised that the impact of the pandemic on patients with CKD and undergoing dialysis was intensified because of its diverse nexus of intertwined biological (including comorbidities) and socioecological factors. Therefore, they advocated the need for the health system not to have a single-disease focus but to ensure comprehensive whole-person care. It has been argued that the COVID-19 pandemic has escalated into a syndemic due to several driving factors: overcrowding, loneliness, uncertainty, poor nutrition and lack of access to health services; and consequently, depression, suicide, domestic violence and psychiatric illnesses have significantly increased.17 Social determinants of health, such as poverty, social inequality, social stigma and the environment where people live and work, significantly affect the intensity of the syndemic,18 which is apparent in the dialysis population particularly in resource-poor settings.
Conclusion
Nephrologists felt vulnerable, helpless and moral anguish because they were unable to provide access to quality and safe care for patients undergoing dialysis. In particular, they were concerned that patients were not receiving an adequate prescription of dialysis with many patients also refusing to attend dialysis sessions. They struggled with infection control measures due to the lack of resources for quarantine and PPE. They also encountered anguish and guilt from having to ration treatment. Better availability and mobilisation of resources and capacities to adapt models of care (ie, telehealth and home-based dialysis) are urgently needed. This may also help to prepare for future pandemics beyond COVID-19 to minimise the consequences on the care and outcomes of patients undergoing dialysis.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the ethics committee of the University of Sydney (2019-899). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We thank all the nephrologists who shared their experiences and thoughts about their perspectives during this COVID-19 pandemic, especially to the nephrologist Dr Andrés Boltansky Brenner, who participated in this study and died because of COVID-19 during the preparation of this article.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @nefroelorca, @allisonjaure
Contributors AMG accepts full responsibility for the finished work and/or the conduct of the study, has access to the data, and controls the decision to publish. AMG participated in the design of the study, conducted the interviews, analysed the data and drafted the manuscript. AMG, EL, SC, AH, CZ-SM, LS, LM, AFF, LC, MM, AT-P, GW, JC and AJ participated in the design of the study, contributed to the analysis and provided critical intellectual input on the manuscript revisions. All authors approved the manuscript.
Funding AMG is supported by Agencia Nacional de Investigación y Desarrollo Becas Chile, Doctorado en el extranjero (72210455). AJ is supported by an National Health and Medical Research Council fellowship (APP1106716).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.