Challenges of COVID: Lessons Learned From Living Kidney Donors’ Experience

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).

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Table 1.

Participant Demographics (N = 25).

Demographic	Number (%)
Donation evaluation stage
Currently being evaluated	8 (32)
Waiting for results	5 (20)
Waiting for surgery to be scheduled	11 (44)
Disqualified/withdrawn	1 (4)
Type of donor
Directed	8 (47)
Nondirected	17 (68)
Gender
Female	23 (92)
Male	1 (4)
Transgender	1 (4)
Marital status
Single	6 (24)
Married/domestic partnership	15 (60)
Divorced	4 (16)
Employment status
Full-time	18 (72)
Part-time	3 (12)
Other	4 (16)

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).

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Table 2.

Semistructured Interview Questions.

- Can you describe how COVID has impacted your donation journey? - Did you encounter any delays or setbacks? - Were there any added worries? - Were you concerned about contagions or increased risk of infection/challenges? - How have you managed (if any) COVID-related challenges?

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.

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Table 3.

COVID Theme Summary.

Theme	Subtheme(s)	Number of mentions	Exemplar quote
Delays in care		40
	Delayed testing	17	“I got scheduled for my initial evaluations, which were supposed to have been in April, and obviously, that all got pushed back because of COVID, so I didn't go in for my kind of two-half days of evaluation until the middle of June.” (008)
	Travel concerns	3	“I would have to travel, and you expose yourself during travel. So, I am going to guess the quarantine there.” (019)
	Coordination challenges	1	“Now we have to coordinate mailing kits up here to get bloodwork to send back for cross-matching [after moving from home to college].” (010)
	Scheduling challenges	6	“I had scheduled a phone call with the social worker, and just like, he forgot the appointment.” (003)
	Process-longer than anticipated	4	“We lost probably three weeks off the top just when everything shut down …” (041)
	New protocols	8	“It had to be that day because COVID testing had to be a certain amount of days before surgery.” (042)
	Treatment differences: in versus out-of-state	1	“People who have done it at my Transplant Center in state to see if they had a drastically different [protocol].” (024)
Inconsistent communication		24
	Changed modality	8	“It's just been, you know, some parts went online to zoom …” (003)
	COVID as an excuse	2	“Well, sometimes it [COVID] feels like a convenient excuse.” (031)
	Disrupted communication	12	“About a month like nothing happened. I didn't hear from the center.” (028)
	Effective communication	2	[They said] “We just want to make sure you know you're taken care of.” (041)
Pandemic emotions		67
	Acceptance	1	“COVID was what it was so that, you know, just kind of have to deal with it.” (008)
	Annoyance	2	“It was a little annoying [regarding having to reschedule].”(003)
	Anxiety	44	“I don't want to be in the hospital and bring home COVID.” (009)
	Feeling overlooked	1	“Everyone is so stressed about everything like I thought it is I thought it [donating my kidney] would feel like a bigger deal in my own life, and it's kind of dwarfed by everything else that's going on.” (032)
	Frustration	1	“The other frustrating thing was asking about, like, what's the impact of COVID?” (028)
	Hope	2	“I just have to hope for the best.” (012)
	Persistence	2	“It's not enough to make me change my mind.” (019)
	Reluctance	1	“We kind of got cold feet [due to COVID] (009)
	Resilience	1	“We can only do so much.” (008)
	Uncertainty	12	“Is this worth just like pushing off just we don't know the long term effects gonna have we don't know if it's going to be like a chicken pox thing.” (019)
Benefits of COVID		27
	Environment	4	“With COVID, I was home alone, and I'm a teacher, so I've been teaching remotely.” (036)
	Flexibility	8	“I have time with COVID everywhere, everywhere. A lot more time than usual.” (033)
	Motivation	3	“I think that also knowing the potential long term, which for me is actually forced me to change that kind of change in my lifestyle like I'm eating a lot better and exercising a lot more. I'm really trying to have balance across the board in my life.” (020)
	Purpose	5	“I was trying to find like meaning for myself in the middle of COVID when I was just sitting around doing nothing when like my summer jobs were canceled.” (010)
	Trust	8	“I do feel like they were super conservative of taking care of the donor, which I did appreciate.” (041)

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.