Visual Abstract
Keywords: kidney transplantation, minority health and disparities
Abstract
Background
Gender disparities in access to kidney transplantation are apparent, with women being up to 20% less likely to receive kidney transplant compared with men across different settings and socioeconomic backgrounds. We aimed to describe nephrologists' perspectives on gender disparities in access to kidney transplantation.
Methods
Fifty-one nephrologists (55% women) from 22 countries participated in semistructured interviews from October 2019 to April 2020. We analyzed the transcripts thematically.
Results
We identified three themes: caregiving as a core role (coordinators of care for partners, fulfilling family duties over own health, maternal protectiveness, and inherent willingness and generosity), stereotyping and stigma (authority held by men in decision making, protecting the breadwinner, preserving body image and appearance, and safeguard fertility), social disadvantage and vulnerability (limited information and awareness, coping alone and lack of support, disempowered by language barriers, lack of financial resources, and without access to transport).
Conclusions
Gender disparities in access to kidney transplantation are perceived by nephrologists to be exacerbated by gender norms and values, stigma and prejudice, and educational and financial disadvantages that are largely encountered by women compared with men across different socioeconomic settings.
Introduction
Gender disparities in access to kidney transplantation are evident across many countries. In general, it is estimated that women are 10%–20% less likely to receive kidney transplantation compared with men, with the gap increasing with age.1 Disproportionately less women are referred for transplantation, waitlisted, or receive a deceased donor kidney transplant than men, and most living kidney donors are women,2–6 which is compounded further in marginalized groups because of ethnic, sociocultural, education, and financial factors.7–9 Poor access to kidney transplantation among women with kidney failure is associated with worse survival and quality of life.10,11
There are gender-based challenges that limit access to transplantation for women worldwide. The World Health Organization defines gender as characteristics of women and men that are socially constructed, including norms, behaviors, and roles.12 The primary role of women as caregivers in the family, lower socioeconomic status, and level of health literacy are barriers to kidney transplantation.13,14 Some differences in access to kidney transplantation may be, in part, attributed to biological factors, including HLA sensitization (e.g., because of pregnancy), age, comorbidity or frailty, and body size, that interact with gender.2,15–21
Nephrologists can have a role in facilitating access to kidney transplantation for patients with kidney failure; however, little is known about their perspectives on gender disparities. Studies have shown that clinicians did not identify gender as a determinant of inequities in access to kidney transplantation.22,23 We aimed to describe the perspectives of nephrologists on gender disparities in access to kidney transplantation, which may inform strategies to improve access to kidney transplantation for patients with kidney failure.
Methods
Context
We used the Consolidated Criteria for Reporting Qualitative Health Research.24 This study was conducted as part of a larger research program on gender disparities across all stages of CKD, with data on CKD and dialysis published previously.25 This study reports data pertaining to gender disparities in access to kidney transplantation.
Participant Selection and Setting
Nephrologists who were practicing general nephrology or transplant nephrology were eligible. We used purposive sampling to include a broad range of demographic and practice characteristics (e.g., age, sex, years of clinical experience). Nephrologists from low–middle-income countries, defined by the World Health Organization as countries with a gross national income per capita below $12,745, were also eligible.26 We identified participants through our collaborative networks, sent an invitation by email, and used a snowballing approach whereby participants could suggest other nephrologists to participate. The University of Sydney approved this study (2019-899).
Data Collection
Drawing from the literature on gender disparities in kidney transplantation,3,27,28 gender theories,12,29–32 and discussion among the investigator team, we developed the interview guide (Supplemental Material). Investigators (A.J. and A.K.) with experience in qualitative research and interest in the research topic, who did not have any relationship with participants before study commencement, conducted semistructured interviews in person at conference centers or by Zoom from October 2019 to April 2020, until data saturation. The interviews were conducted in English or German based on the participant's preference. All the interviews were recorded, transcribed, and translated into English. No field notes or repeated interviews were taken.
Data Analysis
Using thematic analysis, P. Natale coded each transcript line by line and inductively identified initial concepts on gender disparities in access to kidney transplantation. Given the focus on gender disparities, sex-based biological aspects (e.g., sensitization) were outside the scope of the analysis. We coded each study creating new concepts, and similar concepts were clustered into themes and subthemes. The themes were discussed using investigator triangulation to ensure that the themes captured the range and depth of the data collected. The transcripts were imported into HyperRESEARCH software version 4.5.3. Preliminary findings were sent to participants to provide feedback, which were included in the final analysis.
Results
Study Participants
The participant characteristics are provided in Table 1. In total, of the 56 invited nephrologists, 51 (91%) from 36 centers in 22 countries participated, including 28 women (55%). Nine (18%) were from low–middle-income countries, and 30 (59%) were from non–English-speaking countries. Twenty-five of the interviews were conducted in person, and their duration ranged from 29 to 40 minutes.
Table 1.
Participant characteristics (N=51)a
| Characteristic | N | % | |
|---|---|---|---|
| Sex | |||
| Woman | 28 | 55 | |
| Man | 23 | 45 | |
| Age group, yr | |||
| 20–29 | 1 | 2 | |
| 30–39 | 9 | 18 | |
| 40–49 | 11 | 22 | |
| 50–59 | 16 | 31 | |
| 60–69 | 10 | 20 | |
| 70+ | 4 | 8 | |
| Ethnicity | |||
| White | 28 | 55 | |
| Asian | 10 | 20 | |
| Hispanic | 7 | 14 | |
| African | 4 | 8 | |
| African American | 1 | 2 | |
| Middle Eastern | 1 | 2 | |
| Years of clinical experience in nephrology | |||
| <5 | 2 | 4 | |
| 5–10 | 8 | 16 | |
| 11–20 | 15 | 29 | |
| 21–30 | 9 | 18 | |
| 31–40 | 16 | 31 | |
| 40+ | 1 | 2 | |
| No. of patients with CKD (not on KRT) | |||
| 0 | 1 | 2 | |
| 51–100 | 2 | 4 | |
| 101–300 | 5 | 10 | |
| 301–500 | 7 | 14 | |
| 501–1000 | 5 | 10 | |
| 1001–2000 | 11 | 22 | |
| 2000+ | 14 | 27 | |
| No. of patients on hemodialysis | |||
| 1–50 | 6 | 12 | |
| 51–100 | 10 | 20 | |
| 101–200 | 17 | 33 | |
| 201–300 | 6 | 12 | |
| 301–400 | 2 | 4 | |
| 400+ | 9 | 18 | |
| No. of patients on peritoneal dialysis | |||
| 0 | 2 | 4 | |
| 1–50 | 20 | 39 | |
| 51–100 | 14 | 27 | |
| 101–200 | 7 | 14 | |
| 201–300 | 5 | 10 | |
| Countryb | |||
| Austria | 11 | 22 | |
| Australia | 8 | 16 | |
| United States | 7 | 14 | |
| Belgium | 2 | 4 | |
| Chile | 2 | 4 | |
| Mexico | 2 | 4 | |
| New Zealand | 2 | 4 | |
| Nigeria | 2 | 4 | |
| South Africa | 2 | 4 | |
| Transplant nephrologists | 29 | 57 | |
The interviewer verbally asked participants for their demographic information and entered these into a form before commencing the interview. The characteristics displayed in Table 1 reflect the categories that were provided in the demographic form. Both living and deceased donor kidney transplants were performed in all countries.
One participant each from Brazil, Canada, Hong Kong, France, India, Italy, Japan, Malaysia, Poland, Sweden, Switzerland, United Kingdom, and Uruguay; low–middle-income countries included Brazil, India, Malaysia, Mexico, Nigeria, and South Africa.
Themes
We identified three themes: caregiving as a core role, stereotyping and stigma, and social disadvantage and vulnerability. These themes were relevant across countries, cultures, and socioeconomic contexts; however, we have specified where themes were emphasized in a particular community. Selected illustrative quotations to support each theme are provided in Table 2. A summary of themes is shown in Figure 1.
Table 2.
Selected illustrative quotations
| Theme | Quotations |
|---|---|
| Caregiving as a core role | |
| Coordinators of care for partners | “[During clinical appointments] the woman has to come [with their husband], because she is responsible for the cooking and she has to understand what he needs. The wife cares about what the man is allowed to eat.” (Female nephrologist) “Women are not accessing health services as early as they should be because for women the role for the woman is to be the caregiver not to be the patient.” (Female nephrologist) “And my belief was that if it was a woman donating to a man, especially a partner or spouse, she'd say, ʻHey, just take care of my kidney there.ʼ And make sure that he takes his medication.” (Female nephrologist) |
| Fulfilling family duties over own health | “What I see [in women] is delaying or postponing treatment because they want to fulfill their social role as being a mother or a wife or other.” (Female nephrologist) “She only accepted to be put on the [transplant] list after about 12 years of dialysis. And the reason was that she was working as a nurse or nurse aid, she had two or three children at home, and she felt that she had gotten into a rhythm with dialysis, and she didn't want to disrupt her children's lives. And so, she essentially waited until her children were settled before she agreed to be listed for transplantation.” (Female nephrologist) “[Women] have always cared for others and put themselves second.” (Female nephrologist) |
| Maternal protectiveness | Women often get this feeling: “OK, I'm responsible for my family, children etc., so I have to make sure that I stay healthy.” (Male nephrologist) “[Women] don't want to think about living transplantation from their kids because that would be a problem, kind of maternal protection of others over themself.” (Female nephrologist) “I'm done, I've lived a good life. Why would I do that [take a kidney] from anyone? Why would I burden the system? There are other people that need it”—I find more altruism in women than in men, when it comes to their appreciation of things.” (Female nephrologist) |
| Inherent willingness and generosity | “A difference in the transplantation situation is, that the living donation is female. [Women] feel responsible for the illness of their partners, which is much more common in women than in men. Not a lot of men feel responsible for the disease of their wife.” (Female nephrologist) “It's more the giving nature of women. They are supposed to be more caring, and they are the ones who take care of the family. So that I've observed that women are more likely to come out as donors.” (Female nephrologist) “I see men have more fear to donate and men are selfish too.” (Male nephrologist) |
| Stereotyping and stigma | |
| Authority held by men in decision making | “During the conversation you have with couples, it's often the case that women are more likely to donate because they are under a man's thumb, or don't dare to say no.” (Male nephrologist) “We see many more brothers willing to donate to their siblings, whether male or female, than sisters. Because sisters are unable to, because of their husbands. Once they are married, they cannot then go ahead and donate. They need the consent of the husband, who sometimes will be wary of that.” (Male nephrologist) “Even though you were saying that it may be risky for her because she doesn't know what she wants to do when she wants to, and he was like, ʻbut why can't I have that transplant from her?ʼ Then a little bit more egocentric.” (Female nephrologist) |
| Protecting the breadwinner | “[Women] don't expect to take part as an active role as a source of income in the future, then they said, ʻI'll go ahead, and I'll donate.ʼ And they don't work. They don't have to ask permission, a leave of absence, to donate. That's another point, because if you ask permission, a leave of absence, it's an unpaid leave of absence if you want to donate.” (Male nephrologist) “In general, the mother is offering the kidney because the father is working. The idea is that if you give the kidney, you will be not able to carry on a full-time job.” (Female nephrologist) “The life of males is more appreciated than the lives of female gender. Because men, they represent the source of income for the family.” (Male nephrologist) |
| Preserving body image and appearance | “The woman was abandoned by the husband or children, they don't respect the mother, disrespect the wife. The appearance of the women is important in the sexist culture. When women get transplant, because the health problems, they put on weight, the husbands reject them a bit because they are not physically attractive.” (Male nephrologist) “The patient she was a bit older she went for transplant because she wanted to give a child to her husband, she became fat, and the husband just dumped her. Three years later when she stopped the steroids, she became better looking she found another man, a younger one.” (Male nephrologist) |
| Safeguard fertility | “The fertility issue, when women desperately want to have a child, it is difficult when it comes to deciding which drug to use and in which dosage, or if a transplantation is indicated.” (Female nephrologist) “Women are more likely to choose transplantation because they want to have children.” (Female nephrologist) “So, we don't usually accept women who have not had a family, or completed their family, because any pregnancy in a person who's donated a kidney can be more complicated.” (Male nephrologist) |
| Social disadvantage and vulnerability | |
| Limited information and awareness | “Women don't dare to inform themselves or ask questions.” (Male nephrologist) “Do I treat [and inform] male patients better? Yes, maybe because they demand [transplant] more, because you can get rid of women faster.” (Male nephrologist) |
| Coping alone and lack of support | “When women are affected, then the husbands probably on average are less involved in their care.” (Male nephrologist) “She often misses out on her clinic appointments. Her husband is not as helpful. She's working, and she's looking after a young toddler when she's not at work. I really worry that I won't be able to transplant her because she's neglecting herself too much.” (Female nephrologist) “I've got a number a couple of single moms. I don't know, how does the hospital system provide childcare? But for whom that's a big barrier. A social worker can't really find anything except foster care to help them.” (Female nephrologist) |
| Disempowered by language barriers | “In families that come from the Arab world, you can't primarily talk to the woman, everything runs via the man, or at best via their daughters, because the women don't speak German, although they've been living in this country for 20 years. The man speaks German, or the children. You can't hear anything from the patient, just ‘filtered.’” (Male nephrologist) “I see plenty of Aboriginal women from remote communities, and the quality of the conversation in terms of the level of connection that you get that's a personal connection that enables you to explore some of these issues, is very limited. And I don't think you actually can address it without having an indigenous female nephrologist, basically.” (Male nephrologist) “At least one or two a clinic interpreter conversation. And I'm never sure that his reputation is quite accurate, and they aren't ever very definitive in answering questions [because] I do wonder whether that interpretation aspect of it takes away the humanity side of things.” (Female nephrologist) |
| Lack of financial resources | “I guess maybe there are some females who are separated or relationship breakdowns and perhaps leading a more difficult life financially, who have got that ESKD, either transplant or dialysis.” (Male nephrologist) “[Men] control the finances of the family, and they're readily able to take part of the fund, to take it to care for themselves. Where the females are involved, and they do not have the funds, it's maybe more difficult to now raise the fund from wherever it is in the family to support that treatment.” (Male nephrologist) “Dialysis is paid out of pocket here, transplant is paid out of pocket, so the person who holds the pass, the families, what happens? I mean, most places it's the men, and then even when it's not the men, men are prized possessions, so even mothers would not want their sons to donate kidney. Or let's say the son and the daughter is ill, she would rather see that the son is treated and working before the daughter because that's just how it is.” (Female nephrologist) |
| Without access to transport | “Many women do not have a driving license; they are dependent on neighborhood help or public transport.” (Female nephrologist) “The woman only comes to the visit if the man or a child has time to accompany her. Otherwise, it is not possible to have a doctor's consultation.” (Female nephrologist) |
Figure 1.

Thematic schema. Figure 1 can be viewed in color online at www.cjasn.org.
Caregiving as a Core Role
Coordinators of Care for Partners
Participants believed that the role of caregiving was central for women across all countries, cultures, and socioeconomic status. “The role for the woman is to be the caregiver not to be the patient,” and women were less inclined to pursue kidney transplant. They observed that women caregivers would attend clinical appointments and transplant education with their partner (transplant candidate) and would have “more knowledge … over medications” and “answered questions [like] a secretary.” Some believed women were more proactive in managing lifestyle changes, including dietary restrictions, for their partner because they were “responsible for the cooking” or “buying food.”
Fulfilling Family Duties over Own Health
In general, participants noted that women “paid less attention to themselves” because family commitments prevented them to “seek medical care.” Women across different countries who were employed and had children reported difficulties in attending clinical appointments because the “hospital [did not] provide childcare.” They were focused on their children or housework, which limited their ability to “start the transplantation process” or to try and meet the eligibility criteria for transplant (e.g., losing weight). Some believed that women felt “that they need to spend the time [to] fulfill their home duties” ahead of considering transplant and were reluctant to pursue kidney transplant because they felt “anxious about what it would mean for their family” if they encountered health complications. Women from culturally diverse backgrounds and ethnic minority groups (e.g., Māori, Asian) were seen to be even more committed to fulfilling their family roles, such as domestic duties and caring for children and other family members, and would delay kidney transplantation.
Maternal Protectiveness
Some remarked that, generally, women did not want to burden their family and strived to “minimize the impact [of their kidney disease] on the children.” Women “didn't want to disrupt their children's life” and would rather “wait until [their] children were settled” before seeking to be listed for transplantation. Participants commented that women would not accept a kidney neither from their husband, because they feared their children may require a kidney in the future, nor from their children. On the other hand, some found that young women from high-income countries who did not yet commence dialysis were more motivated to consider preemptive kidney transplant because they “wanted to see their kids grow up” and to “stay healthy” to be able to care for their family.
Inherent Willingness and Generosity
Generally, participants noted that women showed “more altruism” and “courage” and were more likely to donate a kidney to the husband. They explained that women “feel responsible for the illness of their partners” and were “more empathic” and “self-motivated” and “volunteer [to donate a kidney] faster.” Kidney donation was also perceived to be an extension of their caring responsibilities across different socioeconomical settings—“You cook, you clean, … and you donate.” Regarding men, participants commented, “If there is a man who comes in needing a transplant, his mom, his sister or his daughter would be trying to give him a kidney. But that's not what happens with women. They usually are looking for a deceased donor kidney.”
Stereotyping and Stigma
Authority Held by Men in Decision Making
Participants believed that women from ethnic minority groups or patriarchal societies were regarded as “subordinates” and submitted to their husband's decision. Participants stated that patriarchal society may be more evident in South-East Asia and Middle East or in Arabic or Muslim communities. For example, women were not permitted by their husbands to donate to their siblings. Some participants noted that “[doctors] can't primarily talk to the woman” and women had “to ask their husbands” for their consent in any decisions made. They commented that women were “under a man's thumb, or don't dare to say no” to donating to their spouse. Some remarked that also in high-income countries, men may expect women to donate their kidney as part of their family role—“Even though [doctors] were saying that [taking kidney from his wife] may be risky for her, [the husband] was like: ‘But why can't I have that transplant from her?’”
Protecting the Breadwinner
Particularly in low-income countries where patients paid for treatment out of pocket, men had more advantage than women in accessing treatments because they were the breadwinners for the family. The health needs of a man would be regarded as high priority—“If [man is] a heavy worker, better to have two kidneys.” One participant relayed that mothers who had both daughters and sons refused to allow male members in the family to donate a kidney because of their role as providers—“The woman is worth half as much as the man. I had this young lady who needed a transplant …. The mother refused that the brother should donate the kidney to the sister because she was a woman.” Participants suggested that women may be reluctant to donate because they would have to take time off work. However, some believed that doctors from high-income countries also “prioritized those who are working [typically men].”
Preserving Body Image and Appearance
Participants found that women expressed fear of taking long-term immunosuppressive agents because it would change their appearance and make them gain weight, and if they were less “attractive,” their husband may abandon them. They mentioned that women from different countries and cultures were anxious about being judged, humiliated, and embarrassed because of their appearance.
Safeguard Fertility
Some nephrologists reported that women from high-income countries opted for transplantation because they did not want to miss the opportunity to have a family—“[Pregnancy] is a need for them … whether you can actually or not [have children] may make a difference to that marriage or your potential to find a partner.”
Social Disadvantage and Vulnerability
Limited Information and Awareness
Generally, women were perceived by participants to have “poorer access to education” and did “not know and have never thought about [transplantation].” Women from low socioeconomic backgrounds and with low literacy were disempowered and could not advocate for themselves—“With women, I have the feeling that they don't tell when they don't think something is good, they just listen to [the doctor] and say yes.” Some reported clinician biases that may limit awareness and access to kidney transplantation among women—“Do I treat [and inform] male patients better? Yes, maybe because they demand [transplant] more, because you can get rid of women faster.”
Coping Alone and Lack of Support
Participants reported that women with kidney failure received less support from the family compared with men across different settings and cultures, and that the husband was not typically involved in caregiving. Women would usually attend clinical appointments on their own. They noted that some women felt depressed and overwhelmed because they were “alone” in managing their condition or “[the] husband is not as helpful” and they could not be listed for transplantation because they were without support.
Disempowered by Language Barriers
In some settings, language barriers were more pertinent among women who could not express themselves adequately and discuss options regarding kidney transplant, and participants remarked that the “English speaking [support person, usually men] tends to dominate the conversation” and make decision. Participants found it challenging to have “discussions [with non-English native speakers, usually women] about transplantation and live donation because they might feel obliged” to donate a kidney.
Lack of Financial Resources
In low-income settings where patients faced financial hardships, some families were found to ration resources for medical care in favor of men——“[If] the son and the daughter are ill, [the family] would rather see that the son is treated before the daughter.” Typically, men were employed and thus had resources to fund transplant-related treatments, while women were often unemployed or were financially unable to access kidney transplantation. In addition, participants noted that women often did not have health insurance so were unable to afford the treatments and to undertake examinations for transplantation workup (e.g., x-rays, ultrasounds).
Without Access to Transport
Some participants noted that generally more women, compared with men, did not have a driver's license or the “hospital doesn't provide transport services” and were reluctant to burden their family with transport-related cost (e.g., parking) to get transplant care—“Usually [women] are the ones who also live in the suburban areas who have a longer travel time and have larger families to look after.” Women in rural areas were dependent on public transport to attend the appointments and prefer to “stay with conservative treatment.” One participant noted, “The woman only comes to the visit if the man or a child has time to accompany her.”
Discussion
There is a pervasive gender gap in access to transplant across all countries, cultures, and socioeconomic contexts, but some participants emphasized the magnitude of the disparity in access to transplantation to be more marked in underprivileged populations. Generally, nephrologists perceived that women tended to prioritize their caregiving role and family responsibilities over their own health and were reluctant to burden their family, particularly their children, and thus chose to delay or refuse an opportunity for a kidney transplant. Nephrologists noted that the commitment of caregiving among women extended to coordinating care for their husbands (if they had kidney failure) and to donate a kidney to them. Women, particularly those exposed to stronger patriarchal society, were observed to be socially disadvantaged because they had little authority in decision making and submitted to their husband's decision about kidney transplant. They were perceived to have a lower social value than men who were regarded as breadwinners and thus may not be prioritized for transplant. Nephrologists noted that women from different countries, cultures, and socioeconomic status may be fearful of gaining weight and changes in their appearance with immunosuppression and being abandoned by their partner. However, some women opted for transplantation to increase their likelihood of pregnancy. Nephrologists remarked that women, in general, had lower health literacy and thus may be less aware about kidney transplantation and managed their health alone with less support from their family. Immigrant women were also observed to face language barriers that prevented them from discussing transplantation with their clinician.
There were apparent differences in the perspectives of nephrologists on the basis of their practice setting and experience, with gender disparities emphasized in low-income settings, or in people exposed to stronger patriarchal society and culture, and in communities with immigrant populations. In low-resource settings, nephrologists remarked that most women were unemployed and thus did not have health insurance or income to support costs for transplantation. In addition, there seemed to be lower health literacy and education among women and less awareness about opportunities for kidney transplant.33 In cultures exposed to stronger patriarchal society, men held positions of dominance and privilege such that they would be protected as the breadwinner and prioritized for transplant, whereas women were expected to be caregivers, not to burden the family, and submit to their spouse's decisions. In countries with immigrant populations, women, in particular, struggled with language barriers and found it difficult to discuss kidney transplantation because of lack of awareness and education, community-based engagement, support groups, patient navigators from the same gender and background, or interpreters.
Some of the gender disparities identified by nephrologists are also similar in the context of CKD and dialysis, in which women were also seen to prioritize their caregiving role over their own health, were reluctant to burden the family, managed their illness alone, and were more vulnerable to social disadvantage.25 Studies in women with CKD showed that they lacked understanding of their condition and were unaware about KRT.34 Women who had donated the kidney reported that they did so to improve the life and health of their partner and that it was expected by their family.35 The financial, social, and cultural barriers in access to care have also been documented in women with different chronic conditions, including diabetes, rheumatological diseases, or infectious diseases.36–38 Our study has emphasized the extension of the caregiving role among women to supporting their spouse in self-management for CKD and to donating a kidney to their spouse. The findings also highlight the profound social inequities, particularly in low-resource settings and in people exposed to stronger patriarchal society that compounded the barriers and inequities of access to kidney transplantation among women.
In our study, we used investigator triangulation, and the participants were from a broad range of settings. We continued recruitment until data saturation. However, our study has some potential limitations. The interviews were conducted in English or German only, and most of the participants were from Austria, Australia, and the United States. Therefore, the transferability of our findings in other settings is uncertain. Further work is needed to ascertain whether there are additional gender barriers, for example, in regions where deceased donor transplant and/or living donor kidney transplant may not be possible. We acknowledge that most of the emphasis was on societal and cultural norms that may pose barriers for women in accessing transplant, with little data related to clinician biases. Data on transgender people or other gender identities were out of the scope of this study.
Globally, reducing gender disparities in access to care is a high priority across many areas in medicine and health.39–42 There is recognition of the need for efforts targeted at improving health education, developing and applying innovative methods and new approaches in gender science, empowering autonomy in decision making for everyone, facilitating access to economic resources, addressing shame and gender stereotypes, and advocating for gender-transformative health policies and laws, particularly for women.43–47 Some international initiatives, such as the Transplantation Society and Women in Transplantation, have been launched to address gender disparities in access to kidney transplantation by providing education to eliminate gender bias within institutions and among health care providers, ensuring strategies to improve participation of women in the transplant process and equity in access to care, engaging in advocacy and communication to change ingrained attitudes, strengthening health literacy among women, addressing values and beliefs in gender-specific roles/duties, and establishing gender-specific support groups.48,49 Furthermore, there have been grants established to build research capacity in lower‐resource settings to address research questions on gender issues in access to organ transplantation in their own unique context.49
On the basis of our findings, suggestions for nephrologists include improving education and communication, reinforcing family and peer support, providing practical support, and ensuring access to financial aid. Specific recommendations are provided in Table 3. At a policy level, we advocate for the investment of financial support toward reducing gender disparities in transplant programs, transparency in promoting gender-equitable access to transplantation, living donor champions to discuss barriers and fears about donation, advocates (e.g., patient navigators) to address psychological burden and gender-specific concerns in transplantation (e.g., pregnancy, weight gain), and support groups to empower women in decision making. Efforts are also needed to challenge stigmatization, gender stereotypes, and discrimination, which should involve patients, community, health professionals, and policy makers. There needs to be strategies to support women in managing family commitments (such as housework or childcare) who require a kidney transplant, to allocate financial resources to support women, and to allow flexibility to attend transplant-related appointments. Future studies are needed to investigate the barriers that exacerbate the disparities in access to kidney transplantation of marginalized women or to address gender roles in the context of partnerships that do not fall within the male–female/heteronormative paradigms.
Table 3.
Suggestions for addressing gender disparities in access to kidney transplantation
| Domain | Suggestions |
|---|---|
| Education and communication | • Provide information, i.e., culturally sensitive and considers the health literacy and language of patients • Address ways to access kidney transplant in the context of the caregiving role and other family responsibilities • Facilitate access to an interpreter or advocate (same gender/background if appropriate) for patients to support communication and decision making • Develop targeted strategies that support patients in decision making about kidney transplant • Discuss concerns about changes in appearance and body image that may occur after kidney transplantation • Provide resources or referrals to multidisciplinary clinicians for lifestyle management for transplant eligibility |
| Family and peer support | • Help patients to identify a support person, if possible • Encourage and provide resources for family members in supporting patients |
| Practical support | • Discuss options for childcare (partnerships between health care systems and community-based childcare organizations) • Facilitate access to transplant to clinic (provide a free-cost transport services to patients or reimburse the parking cost) |
| Financial aid | • Advocate for financial aid (e.g., health insurance for women, paid leave for donors) to access kidney transplantation |
Gender disparities in access to kidney transplantation are evident and related to gender roles and norms whereby women take on a caregiving role and men are protected and prioritized as breadwinners. Overall, nephrologists have observed that women face barriers in accessing kidney transplant because of educational and financial barriers. Providing targeted education on gender disparities, engaging the family and community, emphasizing practical support, and ensuring financial aid may help improve equity of access to kidney transplantation.
Supplementary Material
Acknowledgments
We thank all the participants for their time and effort in sharing their experiences and perspectives. We acknowledge nephrologists by name, with their permission: Ida Aringer, Fatiu Arogundade, Gregor Bond, Rachel Chalmers, Yeoungjee Cho, Michel Chonchol, Rosanna Coppo, Philip Clayton, Nick Cross, Deidra Crews, Razeen Davids, Michael Eder, Kevin Erickson, Gillermo Garcia Garcia, Lai Hooi, Stefan Jacobson, Vivekanand Jha, Karoline Knopp, Maleeka Ladhani, Vincent Lee, Adeera Levin, Nathan Levin, Karl Lhotta, Eduardo Lorca, Valerie Luyckx, Haydee Mellado, Reem Mustafa, Sarala Naicker, Evi Nagler, Masaomi Nangaku, Osvaldo Merege Vieira Neto, Monika Lichodziejewska-Niemierko, Gregorio Obrador, Suetonia Palmer, Gopala Rangan, Benedicte Sautenet, Alice Schmidt, Claudia Schmuckenschlager-Böhm, Elisabeth Schwaiger, Silvi Shah, Manisha Singh, Laura Sola, Hannelore Sprenger-Mähr, Gere Sunder-Plassman, Ifeoma Ulasi, Wim Van Biesen, Andrea Viecelli, Andreas Vychytil, Angela Wang, Martin Wilkie, and Kate Wyburn.
Footnotes
See related Patient Voice, “Gender Disparities in Access to Kidney Transplant,” and editorial, “Gender Disparities in Access to Kidney Transplantation: Perceived Barriers along the Road to Transplantation,” on pages 1245–1246 and 1247–1249, respectively.
Disclosures
J.J. Carrero reports research funding from Astellas, Amgen, MSD, Novo Nordisk, Swedish Heart and Lung Foundation, Swedish Research Council, and Vifor Pharma; advisory or leadership roles for Advisory Committee: AstraZeneca and GSK, Editorial Boards: American Journal of Kidney Diseases, European Heart Journal, Journal of Nephrology, and Nephrology Dialysis and Transplantation; speakers bureau for Abbott Laboratories, AstraZeneca, Baxter, Fresenius Kabi, and GSK; and other interests or relationships with the European Renal Nutrition working group at the ERA-EDTA and the International Society of Renal Nutrition and Metabolism. M. Hecking reports research funding from Astellas Pharma, Boehringer Ingelheim, Eli Lilly, and Siemens Healthcare and other interests or relationships with Bayer AG. N. Scholes-Robertson reports advisory or leadership roles for Rural Kidney Association Inc. (NSW, Australia) and as Patient Editor for Cochrane Kidney and Transplant and reports other interests or relationships with BEAT-CKD Consumer Advisory Board (Australia) and Rural Kidney Association Inc. (NSW, Australia). All remaining authors have nothing to disclose.
Funding
None.
Author Contributions
Conceptualization: Allison Jaure.
Data curation: Patrizia Natale.
Formal analysis: Patrizia Natale.
Investigation: Allison Jaure, Patrizia Natale.
Methodology: Allison Jaure, Patrizia Natale.
Project administration: Allison Jaure, Patrizia Natale.
Resources: Allison Jaure.
Software: Patrizia Natale.
Supervision: Allison Jaure.
Validation: Juan Jesus Carrero, Manfred Hecking, Allison Jaure, Amelie Kurnikowski, Patrizia Natale, Nicole Scholes-Robertson, Giovanni Strippoli, Germaine Wong.
Visualization: Juan Jesus Carrero, Manfred Hecking, Allison Jaure, Amelie Kurnikowski, Patrizia Natale, Nicole Scholes-Robertson, Giovanni Strippoli, Germaine Wong.
Writing – original draft: Juan Jesus Carrero, Manfred Hecking, Allison Jaure, Amelie Kurnikowski, Patrizia Natale, Nicole Scholes-Robertson, Giovanni Strippoli, Germaine Wong.
Writing – review & editing: Juan Jesus Carrero, Manfred Hecking, Allison Jaure, Amelie Kurnikowski, Patrizia Natale, Nicole Scholes-Robertson, Giovanni Strippoli, Germaine Wong.
Supplemental Material
This article contains the following supplemental material online at http://links.lww.com/CJN/B790.
Supplemental Material. Interview guide.
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