Exploring the experiences of the hemodialysis patients during the COVID-19 pandemic: A qualitative study

Study design

This research used qualitative descriptive design that describes the experiences of end-stage renal disease patients undergoing hemodialysis in Indonesia in the era of the COVID-19 pandemic. This method is commonly used in health research and exploring various phenomena related to patient experiences (Doyle, McCabe, Keogh, Brady, & McCann, 2020). A qualitative descriptive research design was selected based on the research objectives, which aimed to describe the experiences of patients undergoing hemodialysis for end-stage renal disease during the COVID-19 pandemic in a direct, extensive, and information-rich manner. Each patient has a unique perspective on their hemodialysis experience during the pandemic. Therefore, the researchers aims to capture these perspectives to develop more suitable nursing interventions for them. Thus, a qualitative descriptive research design is well-suited for this study.

Setting and participants

This research was conducted in February 22 to May 22 2021 at Hasanuddin University Hospital and Wahidin Sudirohusodo Hospital. Recruitment of participants in this research used the method of purposive sampling with inclusion criteria including (1) patients undergone hemodialysis for more than three months, (2) negative PCR swab test result (not confirmed COVID-19), (3) more than 18 years old, and (4) able to communicate in Bahasa. The exclusion criteria were hemodialysis patients with cognitive impairment. The determination of participants is based on data adequacy. Adequate data refers to data that is sufficient to address the research questions, indicated by the achievement of data saturation, where no new information or insights can be obtained from the participants (Bradshaw et al., 2017; Vasileiou et al., 2018). Data saturation was determined independently at each location, based on the absence of new information that corresponded with the unique characteristics of the participants.

Data collection

The data collection method used in this research is in-depth interviews (in-depth interviews). The interview results were documented using a tape recorder to record participants’ verbal responses. The interview was conducted in person at the hospital and via phone from home, following the prior agreement made with each patient before the interview.

Questions were focused on exploring the experiences of patients undergoing hemodialysis during the COVID-19 pandemic, following prepared guidelines for in-depth interviews. We employed a guideline-based interview approach, conducting semi-structured interviews with open-ended questions. In order to assess the efficacy of the interviewer and the interview protocol, we conducted preliminary interviews with three patients who were not part of the study. The outcomes of these preliminary interviews were documented and reviewed with the supervisors. The research proceeded only after obtaining supervisor approval to continue the interviews. Each interview was conducted individually, lasting between 60-90 minutes, with participants given the flexibility to take breaks or reschedule follow-up interviews as needed. Participants were interviewed individually to provide them with greater freedom to express themselves. When conducting interviews, the researcher remained attentive to research ethical principles and implementing health protocols. The interview concluded when the agreed-upon time had expired, the purpose of the interview had been met, and the participants showed signs of fatigue. Data saturation was reached with the 15th participant, as no new information emerged, and no additional participants were recruited. No interviews were repeated in this study.

Rigor of this research was using framework of Lincoln and Guba (Gunbayi, 2024). Credibility implemented by conducted preliminary interviews with three patients who were not part of the study. Researcher spent 6 weeks in average in each site to gain thrustworthies with all participants. The interviewer was the first author, a dialysis nurse with 10 years of experience. She holds certification in dialysis nursing competency, master of nursing degree, has completed qualitative research courses and proficient in data collection through interviews. Two experts oversaw the research, and its validity was assessed through a thesis examination conducted by two expert examiners, with nursing master’s students serving as reviewers. This comprehensive process ensured the research’s quality and reliability. The research proceeded only after obtaining expertise approval to continue the interviews. Transcribed data were returned to participants for confirmation and clarification before being processed further. To ensure transferability in this research, we provided clear and detailed information about the content about the study. Additionally, all statements originally made in local languages have been translated into English to ensure that the research is accessible and understandable to all readers.

Data analysis

Data analysis carried out in this research used inductive thematic analysis consisting of 6 stages, namely recognizing and transcribing data, coding data, compiling themes, reviewing themes that have been prepared, giving names and definitions to themes, and making reports on research results (Braun et al., 2019). Every interview session was recorded and transcribed, and we used field notes to record participants’ expressions during the interview. Transcribed data were returned to participants for confirmation and clarification before being processed further. Additionally, the researchers’ considerations were documented throughout the analysis process to ensure the accuracy and validity of the data interpretation. NVivo 12 Plus was utilized for the analysis (QSR International Pty Ltd. Nvivo, 2024). The findings were shared with participants for verification.

Thematic analysis results

The experiences of end-stage renal disease patients undergoing hemodialysis in the era of the COVID-19 pandemic have yielded three overarching themes. These themes encompass the following: (1) the emergence of diverse responses at the onset of the pandemic, (2) the emergence of various impacts throughout the pandemic, and (3) the development of coping strategies during the pandemic.

Theme 1: The emergence of diverse responses at the onset of the pandemic

The research team identified the initial theme through an analysis of participant responses regarding their experiences with hemodialysis during the early stages of the pandemic. The findings revealed a range of negative reactions, which were grouped under the sub-theme “emotional response and behaviour response.”

Emotional response

At the outset of the pandemic, participants described a range of negative emotional responses. At the outset of the COVID-19 pandemic, individuals undergoing hemodialysis expressed concerns, apprehension, and distrust. Anxiety was reported by nearly all participants at the onset of the pandemic. The majority of participants expressed concern that they might encounter difficulties in accessing hemodialysis in the event of a positive test result for SARS-CoV-2. Additionally, the majority of participants expressed concern about developing symptoms similar to those observed in patients with COVID-19 at the onset of the pandemic. It is not uncommon for patients with chronic kidney failure undergoing hemodialysis to present with symptoms such as cough, shortness of breath, flu-like symptoms, and fever. Some participants indicated that they experienced feelings of anxiety because of being suspected by other patients or the nurses, that they may be carrying the SARS-CoV-2 virus.

Furthermore, some participants articulated apprehension regarding the potential for testing positive for COVID-19 infection due to their classification as a high-risk group. This concern arose because patients with chronic kidney disease have an immune system that is compromised, rendering them more susceptible to infection by COVID-19, as expressed by the participants:

Behavioural response

In the initial stages of the global pandemic caused by COVID-19, individuals exhibited a range of behavioural responses to concerns, fears, and suspicions. Such behaviors include adhering to hemodialysis regimens, concealing one’s health status, and disregarding social etiquette. This is particularly evident among patients with terminal chronic renal failure who undergo hemodialysis therapy to sustain their survival. From the start of the pandemic, participants expressed concern and apprehension about COVID-19. Despite this, all participants made efforts to continue with their hemodialysis treatment.

Participants chose to hide their own or their family’s health status due to fear of being stigmatized as having COVID-19 or being in contact with someone who had it. For example, one participant mentioned:

Another behavioural response observed was a disregard for social norms and etiquette. Some participants exhibited a tendency to disengage from social interactions because they were excessively afraid of contracting COVID-19.

Theme 2: Various impacts

The COVID-19 pandemic has had a significant impact on various aspects of the participants’ lives as patients with end-stage renal disease undergoing hemodialysis. These impacts are summarized in the sub-themes of physical, psychological, social, and economic effects, as well as the implementation of health protocols experienced by participants during the pandemic.

Physical impact

The majority of participants reported experiencing physical effects, including weight gain during interdialytic periods, shortness of breath, elevated blood pressure, pain, discomfort, and bleeding. The most frequently reported issue was interdialytic weight gain. As a result of the pandemic, patients’ hemodialysis schedules were postponed if their swab results were unavailable. In some cases, it was found that the results of the swab were received 1-2 days after swabbing process, due to limitations in resources. In addition, some patients’ schedules have been modified as a result of the hemodialysis unit’s efforts to optimize the hemodialysis schedule. Shortness of breath represents a physical impact experienced by participants as a consequence of delays or alterations to their hemodialysis schedules. An increase in blood pressure was found as a physical impact experienced by hemodialysis patients during COVID-19 pandemic due to anxiety about swab results. Some participants exhibited considerable anxiety regarding the results. The swab yielded a positive result, which was accompanied by an increase in blood pressure. The subsequent physical impact is pain. The mandatory swab obligations carried out by participants are a cause of pain, which is necessary for them to continue undergoing the hemodialysis process. Although participants reported discomfort and pain related to repeated swab testing, they emphasized that this was not as severe as the pain and complications caused by fluid overload, which represents a more critical physical burden for hemodialysis patients.

Many patients complained of weight gain during interdialysis due to the delay of hemodiakysis schedule during the COVID-19 pandemic.

Another physical impact reported by the participants was difficulty breathing, which was often the result of postponed or rescheduled hemodialysis sessions.

The subsequent physical impact observed was an increase in blood pressure due to anxiety over swab test results. Several participants experienced significant anxiety at the prospect of testing positive for COVID-19, which in turn led to elevated blood pressure. The following are quotes from some participants:

The other physical impact is pain. This is a direct consequence of the mandatory swab, which participants must carry out in order to continue undergoing the hemodialysis process. The process of taking samples for swab examination, which occurs every 2-3 weeks, causes pain for some participants. The following statements from several participants illustrate this point.

Psychological impact

The COVID-19 pandemic has also had a significant psychological impact on patients undergoing hemodialysis. The necessity of awaiting the results of the swab and the obligation to undergo continuous swabs has resulted in the patient experiencing disturbances to their sleep patterns, a sense of being a burden, and a perception of being under constant observation during the course of this pandemic. The majority of participants reported experiencing disturbances in their sleep patterns during the pandemic. However, during the current pandemic, these problems have been exacerbated due to concerns about the results of the swab. The majority of participants reported feeling burdened by the obligation to undergo swab tests. The obligation to undergo swabbing every 2-3 weeks necessitates that participants visit a hospital outside of their scheduled hemodialysis appointment and other scheduled examinations. The process of swabbing is quite intricate and time-consuming. The extended period is a significant burden for participants, particularly given their history of complications related to declining kidney function. One participant also reported a psychological impact resulting from the constant observation by nurses.

Many participants stated that during the pandemic, their sleep patterns were disrupted after knowing their swab result.

Another psychological impact was the sense of being overwhelmed by the frequent swab tests. The necessity of attending the hospital outside of their regular hemodialysis schedule introduced an additional source of stress to an already challenging situation. The process of scheduling and undergoing the tests was found to be overwhelming by the participants, as evidenced by the following description:

Another participant echoed this statement:

One participant believed that being observed continuosly by the nurse constituted a psychological influence that also occurred.

Social impact

Additionally, several participants reported experiencing social impacts as a result of the pandemic. A reduction in social interaction and a sense of ostracism were among the social impacts experienced by participants in the hemodialysis unit. Other social impacts include instances of ostracism. Some participants have been avoided by their families and neighbours during the pandemic due to the assumption that they had contracted the COVID-19 virus from the hospital.

The pandemic also had a profound social impact on participants, particularly in terms of social isolation.

Others were shunning another social impact. Some participants reported being avoided by their neighbours and family members due to fears that they might bring COVID-19 home from the hospital.

Economic impact

Additionally, several participants reported experiencing the economic consequences of the global pandemic caused by COVID-19 pandemic. The cost of living has risen for those who require hemodialysis therapy. The obligation to undergo swabbing procedures has resulted in an increase in the number of visits to the hospital by participants, necessitating the expenditure of funds on transportation. Furthermore, participants are required to bear additional costs associated with the procurement of personal protective equipment, including masks.

Theme 3: Coping mechanisms developed

Adaptive coping

Adaptive coping is the most prevalent coping strategy individuals employ in response to challenges encountered during the ongoing pandemic. Other coping adaptations employed by participants include spiritual strengthening.

Some participants attempted to maintain a positive outlook despite the negative emotions they experienced during the pandemic.

Another adaptive coping strategy was dietary change. Some participants modified their diets to forestall any complications before undergoing swab tests.

Furthermore, participants demonstrated an ability to adapt to the revised schedule and the necessity of utilizing personal protective equipment (PPE) during hemodialysis.

Maladaptive coping

While some participants employed adaptive coping strategies in response to the various challenges and difficulties encountered during the ongoing pandemic, others resorted to maladaptive coping mechanisms to deal with the pandemic’s multifaceted impacts. Some participants treat themselves if they felt having similar to COVID-19 symptoms, employed excessive prevention and withdrawal mechanisms as a means of adapting to the conditions of the pandemic.

Another maladaptive coping strategy observed was social withdrawal during hemodialysis. Some participants elected to withdraw from social interactions in order to circumvent the stigma associated with their condition. As individuals with end-stage renal disease, they were required to undergo hemodialysis two to three times per week at the hospital. However, the stigma associated with COVID-19 prompted them to avoid contact with others.

Limitations

Due to the COVID-19 pandemic, interviews were limited to face-to-face sessions with 4 participants and phone interviews with 11 participants, based on their comfort levels. Health protocols during face-to-face interviews sometimes led to unclear responses, requiring follow-up questions, which may have affected the depth of the data. Additionally, the reliance on phone interviews limited the observation of non-verbal cues, potentially impacting the richness of the insights. The study’s findings are also based on a specific sample from two hospitals in Indonesia, which may limit their generalizability to other populations and contexts. During the period when this study was conducted, compared with the current context, the COVID-19 pandemic as the issue of this research, has changed significantly. Because it’s no longer as severe as it was. However, the findings from this research provide valuable new insights into the needs of hemodialysis patients when dealing with challenging condition.

Implications of this study

Clinical practice implications

Strengthening psychosocial interventions, including stress management and peer-support groups, should be prioritized in hemodialysis units to enhance patient resilience during future health crises. Healthcare providers, especially dialysis nurses, should deliver holistic care and provide sufficient information about the pandemic to address both physical and psychological needs, thereby reducing patients’ anxiety and stress. Furthermore, the findings of this study highlight the importance of enhancing continuing professional development programs for dialysis nurses to strengthen their capacity in managing patients with chronic disease during pandemic situations.

Health policy implications

Health policies should prioritize preparedness for future pandemics by ensuring flexible care schedules and maintaining access to essential treatments, minimizing disruptions to patient care in times of crisis. Continuous evaluation of healthcare systems’ resilience is necessary to protect vulnerable patients in any future public health emergencies.

Research implications

This study is a valuable reference for developing bio-psycho-social interventions tailored to chronic kidney failure patients receiving hemodialysis, particularly during pandemic conditions. Further studies are needed to explore factors influencing patients’ coping strategies and to evaluate the long-term effects of the pandemic on the quality of life of dialysis patients.