Abstract
The COVID pandemic disrupted healthcare systems worldwide, affecting medical care delivery, including transplant centers. As sites of tertiary healthcare delivery, living kidney donations were particularly impacted, with delays, communication challenges, and an increased burden on potential donors. This qualitative study explored the lived experiences of individuals navigating the predonation evaluation (PDE) during the pandemic. Through 25 semistructured interviews, the participants shared insights into delays in care, inconsistent communication, pandemic-related emotions, and unexpected facilitators. The constant comparative analysis method identified key themes, including (1) delays in care due to COVID, (2) inconsistent communication due to COVID, (3) pandemic-related emotions, and (4) pandemic-era shifts that facilitated living kidney donor (LKD) PDE. The data highlighted the importance of maintaining patient-centered care, effective communication and pointed to specific ways to improve the patient's experience. These themes highlight mitigating strategies to address future care for other types of LKD disruptions.
Introduction
In 2020, the United States identified the first cases of COVID-19, a novel coronavirus causing a potentially deadly respiratory illness, which the World Health Organization (WHO) recognized as a global pandemic in March. 1 During the pandemic, the healthcare system experienced disruptions to medical appointments, testing, treatments, and surgeries as providers pivoted to address acute illness or prevent transmission. New guidelines, including transitioning to remote work, staffing shortages, and increased burnout, also impacted healthcare. 2 COVID-related concerns prompted patients to delay or avoid medical care, increasing mortality and morbidity rates of treatable and preventable health conditions. 3 Additionally, the widespread use of telehealth impacted patients’ perceptions of the healthcare delivery system.
Shifts in medical care also occurred throughout transplant centers. In March 2020, transplant centers modified their predonation evaluation (PDE) processes (when individuals undergo testing to be approved as donors), which reduced living kidney donations. 4 Many transplant centers transitioned to remote or work-from-home statuses to reduce the spread of COVID, disrupting living kidney donors’ (LKD) communication with the transplant teams and care delivery. 5 These changes in care protocols—including quarantine requirements—exacerbated common burdens LKDs already experience during donation, especially impacting the PDE process, which is an onerous step under normal circumstances.
This study highlights the first-hand experiences of individuals undergoing PDE during the COVID pandemic. Understanding LKDs’ insights and their intent to persist provides future directions for enhancing LKD and other healthcare delivery in a postpandemic world.
Theoretical Foundation
This study design implements Minimally Disruptive Medicine (MDM) concepts, which is a theory-based, context-sensitive, patient-focused approach to care that supports individuals in meeting their health goals by imposing the least possible burden.6–10 MDM has 4 principles for minimizing a patient's reported burden: (1) establishing the weight of the burden, (2) encouraging coordination in clinical practice, (3) acknowledging comorbidities in clinical evidence, and (4) prioritizing care from the patient's perspective by involving treatment burden mitigation. 11 MDM steered the interview guide development and data analysis. Additionally, it described the concept of workload-capacity balance and how it relates to participants’ perception of burden, which emerged as a critical concept for the study.
Participant Selection
From September through November 2020, the first author completed an extensive qualitative, semi-structured interview study to explore the experiences of LKDs. In addition, an independent substudy of LKDs undergoing PDE during the pandemic participated in a study exploring specific COVID-related experiences. Thirty individuals met the initial study criteria of being actively involved in the living kidney donation process or being withdrawn or disqualified from the evaluation process. Of that sample, 25 qualified and consented to participate in the substudy. Though recruited through a convenience sample, most participants were female (92%), which aligns with the national trends for living donors. 12 Given that we targeted individuals who had not completed the transplant, most were in the early stages of or waiting for the PDE results (52%). One (4%) withdrew from the PDE due to test results unrelated to COVID (see Table 1 for the participant demographics).
Participant Demographics (N = 25).
Methods
Participants recruited through social media volunteered and qualified for the primary LKD interview. Those undergoing PDE during the pandemic were invited to participate in the substudy. If the participants met the criteria, the interviewer contacted them to schedule their interview and obtain consent.
Once consented, participants noted their interview type preferences, either phone or Zoom, and the interviews were conducted from September to November 2020, the point in the pandemic when tests and vaccines were not yet available and lockdowns and social distancing were the main protocols employed to minimize the virus's spread. The substudy interviews lasted ∼15 to 20 min following the primary interview. It included 5 semistructured questions focusing on participants’ experiences with COVID and its effects on the PDE process (see Table 2).
Semistructured Interview Questions.
Data Analysis
The interviews were audio-recorded and transcribed for data analysis using a cloud-based recording and transcription mobile application. 13 Each transcript was reviewed to ensure word-for-word accuracy. The researchers used inductive analysis, allowing meanings to emerge from the participants’ perspectives. Therefore, the data informed the findings through an iterative process that developed new theoretical themes. 14 The first author shared a summary of the findings with all interview participants as participant validation to ensure resonance, and participants confirmed that their responses were summarized appropriately.
Three coders reviewed the transcripts line-by-line. After independently reviewing the codes, they discussed their codes to ensure intercoder reliability and that all experiences were adequately captured and categorized. They completed 3 iterations of this process to finalize the themes derived from the data.
Results
The majority female participants provided insights into their LKD PDE experiences during the COVID pandemic. Patterns emerging from their experiences allowed the authors to identify 4 themes: (1) delays in care due to COVID, (2) inconsistent communication due to COVID, (3) pandemic-related emotions, and (4) pandemic-era shifts that facilitated LKD PDE. Table 3 shows a breakdown of these themes, which are explored in detail below.
COVID Theme Summary.
Delays in Care Due to COVID
Several participants discussed experiencing various delays during their qualifications, including delays in scheduling appointments and tests. One participant shared that their scheduling challenge resulted in a provider forgetting their appointment: “I had scheduled a phone call with the social worker, and he forgot the appointment (003).” Another explained, “I got scheduled for my initial evaluation, which was supposed to have been in April … that all got pushed back because of COVID. So, I didn’t go in for my two evaluation days until the middle of June (008).” As could be expected, the pandemic delayed tests and appointments, disrupting an already complicated process.
In addition to delays in tests and appointments, individuals shared examples of “los[ing] some time with COVID … (028)” to the point of ending the PDE process altogether. One acknowledged that their surgery was canceled, emphasizing their emotional response to the cancelation: “The day we got the call [about cancelation] was very hard (041).” Another shared how they decided to stop the process, saying, “I had planned to donate prior to COVID, and then we kind of pumped the brakes (008).” Concern about possible risks associated with COVID and changes to medical protocols caused them to pause the PDE until things normalized. These examples illustrate how challenges caused by medical systems could either stall or end donation goals.
In addition to pandemic-caused delays and cancellations, some participants expressed that the new COVID protocols and safety measures added burdens to the normal steps of the PDE. One voiced frustration about the challenges surrounding COVID testing: “I’m running to get to the COVID test. If someone were not invested in the process or maybe not medical, they would have been like ‘screw this [process]’ a long time ago because someone holding your hand [would make] this easy (042).” Others discussed the challenges of adapting to changes instituted to prevent the pandemic's spread, which increased some participants’ burden levels. These changes included travel modifications and additional screenings to qualify as a donor. Several participants explained that these new protocols derailed their travel plans and contributed to their concerns about COVID exposure. For instance, one participant remarked that they were apprehensive about traveling to the transplant centers due to “[potential] exposure to COVID (001,019).” Thus, in addition to the normal efforts required to protect their own health and complete standard screening requirements, potential LKDs also had to navigate the risks of the virus and the additional testing that COVID required.
Additionally, stringent quarantine requirements hindered several LKDs during their travel to PDE appointments. One participant who was unable to proceed with the testing described how onerous the quarantine requirements were on top of normal travel expectations: “To do the … testing, I would have to travel to Boston, self-quarantine for 14 days, do the [full day of] testing, and go home. If I were a suitable match, I would go back to Boston, self-quarantine for 14 days, do the surgery, and then 10 days later, I could go home. I don’t have that kind of time in my life to stop everything like that (005).” This is another example of how COVID precautions, such as delays, additional testing, travel disruptions, and quarantining, compounded and amplified burdens in living kidney donation.
Inconsistent Communication Due to COVID
Mixed messages from healthcare staff and communication disruptions due to COVID also increased LKDs’ burdens. Many remarked that their transplant coordinators started working from home, relying on Zoom and phone calls for telehealth delivery. Participants’ reactions to changes in communication modality varied. Some stated that the transition to telehealth worked well: “All of them [transplant team encounters] have been Zooms … everything's been great (036).” Conversely, others observed that changes in communication modality created new issues. Those challenged with transitioning to telehealth often attributed the barriers to miscommunication. These participants noted that the switch caused test confusion, long silences and setbacks, requiring significant extra work for the LKD. One remarked, “I think a lot of them are working remotely, but I do feel like there is a disconnect [between the transplant coordinator and LKD] (024).” As transplant teams began working remotely, the switch in messaging channels disrupted regular communication for some LKDs, who interpreted long periods without interaction as miscommunication.
In addition to the switch in messaging modality, communication disruptions also included silences, delays, and general confusion. One participant described the silence they experienced trying to get information from their transplant center in these terms: “Two weeks later, [I] still haven’t heard anything. I initiate the contact with [the center] (031).” Silence compounded existing problems, with one LKD noting silence added to COVID-related challenges: “I have to wait to hear from them [about making travel plans for the testing] (019).” Many communication challenges were associated with confusion regarding tests and processes. One LKD stated that their “COVID appointment went kind of sideways. Again, I was like, ‘What are you guys doing? I kept thinking, ‘Is this your first time [completing COVID testing]?’ (042).” Thus, LKDs interpreted their transplant team's silences, delays, and confusion as interactions that discredited their providers and challenged their trust in the team and its processes.
Some participants even felt that the transplant team used COVID as an excuse for delayed responses, which were actually caused by disorganization or neglect. One explained how the “[transplant coordinator's] voicemail message says, ‘there may be a delay in getting a response because of COVID and we’re short-staffed’. And it's like, I'm calling you, and you're working full-time. Why can't you [call me back]? It [COVID] feels like a handy excuse [to not return calls quickly] (031).” One suggested the communication breakdown was standard: “I don’t think COVID changed this [communication and process complications]. I feel like this is just their process (042).” Thus, many participants expected predictable and consistent touchpoints from their transplant teams and did not accept the pandemic as a reason for the inconsistencies.
Pandemic-Related Emotions
LKDs expressed many emotions related to undergoing PDE during a pandemic. Several participants discussed feeling anxious and frustrated about the delays caused by quarantines and shutdowns. The anxiety and worry that accompanied the shutdowns were apparent in participants’ language and other nonverbal cues as they described their experiences. One expressed concern regarding how pandemic shutdowns might impact the progress of procedures: “I am a little worried that if they put a kibosh on nonessential surgeries … Would the transplant [be nonessential]? (022)” Another described that waiting for approval may result in repeating previous PDE tests, “I might have to retest for something depending on how long it takes because of COVID (034).” Another expressed heartache when their surgery was postponed, “[There were] lots of tears and frustration. I was just so ready to have it behind me, and again, it's hard to say because a lot of this is COVID [due to postponed surgery] (041).” Another LKD experienced frustration, describing how COVID diminished the excitement surrounding their decision to become a living donor. “I thought it [donating my kidney] would feel like a bigger deal …, and it's kind of dwarfed by everything else that's going on (032).” The decision to explore living donation was minimized by COVID, resulting in an anticlimactic experience.
In addition to anxiety and frustration, participants expressed uncertainty in several interviews. COVID risk factors and long-term effects weighed heavily on many participants, manifesting as worry and apprehension. Often, participants explained that they avoided areas where COVID transmission might occur, especially in hospitals. “I don’t want to be in the hospital and bring home COVID…there are so many unknowns (009).” They noted that although they wore masks, they were still concerned about COVID transmission. One proclaimed, “None of us really knew how to social distance (042),” which illuminated the additional burden COVID uncertainties brought. Several participants discussed uncertainties surrounding the long-term effects of a COVID infection. One remarked, “[COVID] does give me pause because we don’t know how that's going to affect the body in the long term. But it is not enough to make me change my mind (019).” Another expressed their unease, “[I’m] a little bit unsure just because COVID is new (003).” These participants’ words show how the additional uncertainty, risk, and threats of COVID amplified routine anxiety, uncertainty, and other negative emotions that need to be overcome to complete the donation.
Although some individuals expressed concerns about the uncertainty and risks of COVID, several articulated trust in the transplant team. “I'm a little concerned [about COVID],” said one participant, “but at the same time, I believe the hospital is a very good hospital with the best interest of all its patients at heart, and I'm hoping and believing that their medical decisions are not being driven by financial decisions. I trust them [the transplant team] to know when to take out my kidney (021).” Others expressed willingness to accept the current conditions, even with uncertainties, stating, “We can only do so much (008).” Another explained, “I did ask extra questions about that [COVID], but I feel ok (003).” In these cases, participants relied on the trust they had already developed in their transplant team to overcome the additional risk and uncertainty posed by COVID.
Pandemic-Era Shifts That Facilitated LKD PDE
Although participants discussed burdens resulting from COVID, surprisingly, some expressed facilitators. For instance, participants identified flexibility, extra available time, motivation to establish or maintain healthy behaviors, and a feeling of purpose as pandemic shifts that facilitated PDE.
Several participants felt the pandemic was the right time to donate, as quarantine and social distancing eased social obligations. Several remarked, “I have time with COVID everywhere – a lot more time than usual (033).” The mandated social distancing created flexible routines, and several explained that donation gave them something to do since “I’m wide open as far as a schedule (031).” Many saw their increased availability as a chance to donate, turning the pandemic into an opportunity to help their recipient. “I look at it as something good can come out of COVID because I’m home (022).” This shows how disrupting regular working and socializing routines alleviated some of the donation burden by creating availability and flexibility in some donors’ schedules.
Some LKDs expressed feeling motivated to improve their health and avoid the risk of COVID. One explained that they used COVID to help motivate them to stay healthy and avoid places where they would be at risk for infection, “I’m trying to stay well because I’m donating a kidney … Why would I risk it [with COVID] now? (036).” COVID also allowed participants to reflect on their health statuses, with one LKD stating, “I think that knowing the potential long-term [COVID] risks actually forced me to change my lifestyle … I’m really trying to have balance across the board of my life (020).” In reaction to the increased hesitancy the novel virus inspired, participants donating a kidney during COVID chose healthier behaviors and committed to safety protocols that reduced their risk of experiencing COVID-related illness and increased their chances of a successful donation.
One surprising facilitator shared by participants was a sense of purpose during otherwise tremulous times. One said, “With COVID, I was home alone. The process of being evaluated for kidney donation has kept me sane. It gave me purpose…This donation process has saved my life, not that COVID hasn’t affected me. But this donation saved me, and it has grounded me (036).” Though isolation and restrictions caused distress, LKDs described donating as a way to cope with the pandemic by focusing their attention on helping the recipient.
Discussion
The COVID pandemic caused global disruptions, including quarantines, lockdowns, social distancing, and delayed and canceled medical encounters, resulting in concerns and increased anxiety.15–17 The LKDs’ multifaceted challenges were apparent in the findings, which explored their lived experiences undergoing the PDE during the COVID pandemic. The findings illuminate how pandemic-related disruptions exacerbated known burdens during the donation process and reveal unexpected burdens and facilitators that emerged to help manage the burdens during the unprecedented conditions.
In general, patients often enter medical encounters with vague expectations seldom expressed openly to the medical team. 18 Participants noted that they entered the PDE with expectations, including anticipating burdens. The anticipated burdens related to patient expectations are the expectation, belief, or mental picture of their healthcare encounters. 19 Their expectations are derived from previous healthcare encounters or perceptions of what should happen.20,21 However, when these expectations do not align or exceed what was expected, the individuals experience unanticipated burdens, resulting in an imbalance in their workload and capacity to balance the challenges. 22
The workload and capacity imbalance findings align with concepts of minimally disruptive medicine and treatment burden. Participants’ narratives revealed how disruptions in healthcare delivery increased the workload of being a donor and strained their capacity to manage that burden.6,10 The pandemic amplified well-documented challenges in the LKD process, such as testing and scheduling complexities, 23 logistical hurdles, 24 and emotional stressors.23,24 However, COVID-specific factors, such as lockdowns, travel restrictions, and quarantine mandates, introduced new disruption layers.
Participants acknowledged being constrained by several unanticipated burdens, such as delays in care, inconsistent communication, and negative pandemic-related emotions. However, they also noted positive meanings and pandemic-era shifts that facilitated PDE for some participants. The participants expressed that the delays in care undermined their sense of momentum in the process. They described rescheduling, pausing, and, with some, stopping the testing while the transplant centers were transitioning to remote work. These COVID-related delays reflected systemic rigidity that hindered participants’ persistence through the complete donation process, reducing the potential donor pool long-term. 4
Inconsistent communication from the transplant team, mainly driven by remote work transitions and staffing shortages, further compounded the burdens experienced during COVID. Although some reported satisfaction with telehealth, others described significant frustrations and feelings of abandonment or confusion. The variation in telehealth experiences suggests that digital modalities can facilitate or impede care, depending on their implementation and patient expectations. 25
The emotional toll of navigating PDE during this time revealed pandemic-related emotions for the participants. According to these interviewees, familiar feelings of anxiety, frustration, and worry among LKDs 24 were exacerbated by COVID. Acknowledging these burdens is vital because they may influence the LKDs’ motivation, persistence, and well-being. At the same time, participants who noted having trust in the transplant team indicated how it served as a facilitator, enabling them to tolerate uncertainty and persist. 22 This underscores the critical role of relational continuity and trust-building in minimizing disruption and supporting patient resilience. 26
Despite these burdens, participants described pandemic-era shifts that facilitated the donation process. Participants expressed that, because of the pandemic, they had flexibility in scheduling, reduced social obligations, and a renewed focus on personal health and purpose, enabling specific individuals to progress more easily. These facilitators challenge assumptions that crises only hinder healthcare access; sometimes, the conditions that disrupted care also made space for meaningful engagement. This paradox highlights the importance of understanding and leveraging contextual factors in patient care, an essential tenet of MDM. 10 Sometimes, the disruptions generate unanticipated facilitators that could be strategically capitalized on amidst the problems that inevitably come with the disruption. Further, drawing attention to this complex interplay between unanticipated circumstances that affect workload capacity-balance and noting how they can contain both barriers and facilitators may help healthcare professionals better understand LKDs and create conditions supporting persistence through donation. Indeed, strategies such as trust in the transplant team, focusing on meanings behind donation, and intentionally supporting the potential donors’ time flexibility can all be employed to reduce burdens and support LKDs’ persistence during times with normal operating procedures.
Moreover, the COVID pandemic has provided an ideal opportunity to illustrate potential pain points associated with communication practices supporting PDE under normal circumstances. The heightened impact of silence, confusion, and messaging modality changes during the pandemic underscores the need to improve communication practices in normal operating circumstances and make effective preparedness plans for maintaining contact with LKDs during future disruptions. These communication challenges experienced during the pandemic—and the critical mitigating factor, which was trust in the care team, was for LKD persistence amidst communication disruption—are instructive for nonpandemic times because they indicate persistent gaps in healthcare communications that require attention. They also point to how establishing trust in the care team can act as a facilitator against communication disruptions of multiple types and causes. 26 Individuals often felt ignored and confused, and sometimes felt like their team used COVID as an excuse—a distinct sign of a lack of trust. Like our findings, oncology patients acknowledged the challenges of limited communication and guidance, scheduling appointments and screenings, travel restrictions, and limited hospital access. 17 The fact that these communication issues are mentioned as barriers in high-stakes healthcare situations, where persistence could mean life or death, and that trust in care providers can bridge silences, confusion, and other communication problems, could significantly impact postpandemic practice.
Additionally, the findings suggest the importance of watching for unanticipated facilitators that may emerge during disruptions and finding ways to incorporate them into routine care practices to maximize their benefits. For instance, participants identified time flexibility, enhanced motivation to enact healthy behaviors, and recognizing the meaning of donating as supports to their persistence, which are possible outside of pandemic circumstances. These findings align with previous studies, which suggested that donors are more willing to donate if they have more information about the donation process, understand how it will impact their lives, and have motivations. 27 By identifying and promoting the potential positive aspects of the choice to persist through the donation process, healthcare providers can increase their capacity to mitigate the PDE burden and enhance the overall experience of potential donors. These strategies include providing comprehensive education and support resources, facilitating clear and transparent communication, and fostering a supportive and trusting environment throughout the donation journey.
Limitations
This study is not without limitations. The recruitment methodology of using social media might have contributed to potential biases. Due to the small, homogenous sample, the participants may not represent all situations experienced by LKDs donating during the pandemic. Individuals were self-selected to be interviewed, limiting the sample to those who volunteered. Additionally, the sample was comprised primarily of women, which limits the ability to gain insights into potential challenges and positive aspects experienced by other genders. However, this aligns with the national donation rates, where women are overrepresented as LKDs in the United States.12,22 This gender gap supports the need for additional exploration to understand the burdens experienced across all genders.
Another potential limitation is the lack of representation of LKDs who opted out of or were disqualified from the PDE. The persistence through the donation process is significantly variable. 22 Variability is evident between those who opt out or are dismissed. Studies show 13% to 27% of potential LKDs opt out of the donation process, 28 and 43% to 55% are dismissed as potential donors.29,30 This study did not represent this subset of the LKD population, which could also be attributed to the recruitment methodology. The lack of disqualified or opted-out LKDs’ experiences limits this study's ability to represent the potential burdens experienced due to that situation.
Additionally, the nature of qualitative research prohibits the generalization of these data but instead focuses on privileging participants’ voices and prioritizing the richness and contextual meanings of their experiences. Hearing the LKDs’ experiences can help healthcare providers understand their challenges and how some could be mitigated. It also provides insight into the development of future studies.
Conclusions
This study offers a timely lens into how the COVID pandemic affected individuals navigating the LKD PDE process. It reveals both the amplified burdens and unexpected facilitators experienced by potential donors, providing critical insights for improving healthcare delivery under strain. It shares LKDs’ perspectives of challenges and facilitators to care and offers actionable approaches to improve care during crises. By understanding the LKDs’ experiences, healthcare providers can improve the quality of care and patient outcomes. Future research is needed to expand these findings and develop targeted interventions to improve patient experience and outcomes by focusing on consistent communication, building trust in providers, and acknowledging the role of emotions in supporting persistence in high-stakes medical contexts.
Footnotes
Acknowledgments
We want to thank the 25 individuals who courageously shared their stories about their successes and challenges experienced during the living kidney donation process.
Authors’ Contributions
KN conceived and designed the study and conducted data collection. KN, RC, and SS completed the data analysis. KN provided expertise in living kidney donation as she has lived experience as a living kidney donor. KN and RC provided expertise in qualitative data methodology and analysis. KN, SS, RC, and LS drafted the manuscript, with critical revisions from all authors. All authors contributed to the interpretation of results, reviewed and approved the final manuscript, and agreed to be accountable for the work. Additionally, this study represents components of KN's dissertation, which was completed and successfully defended in 2021.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following support for the data collection for this article: This work was supported by the OHIO Graduate College and Graduate Student Senate Original Work Grant (2020-2021) as part of Dr Nottingham's dissertation research.
Ethical Approval
The Ohio University Institutional Review Board (20-E-268) approved our interviews on September 2020. All participants provided verbal informed consent prior to enrollment in the study.
Statement of Human and Animal Rights
Not applicable.
Statement of Informed Consent
Informed consent was obtained verbally before participation in the study. Additionally, participants consented to audio-record the interviews and their data was anonymized for data analysis and publication.