Ethical challenges in organ transplantation for Syrian refugees in Türkiye

Abstract

Background

There is limited information on the ethical issues encountered in living donor organ transplants performed on refugees and asylum seekers. This study investigates the ethical challenges faced by Syrian refugees under temporary protection in Türkiye who engage in living donor organ transplants.

Methods

From April to July 2022 in Istanbul, the research employed a qualitative design involving semi-structured, in-depth interviews with 27 participants, including organ donors and recipients. The analysis utilized a thematic analytic method.

Results

The findings elucidate two principal themes related to ethical concerns: justice and autonomy. Under the justice theme, several sub-themes emerged, highlighting the multifaceted challenges Syrian refugees face in accessing healthcare services. These include migration and language barriers, significantly impeding their ability to understand medical procedures and rights. Financial difficulties and restricted movement within the country further complicate their access to necessary healthcare. Despite these hurdles, refugees benefit from free access to organ transplantation services and medications, a policy underscoring Türkiye’s commitment to healthcare equity for protected populations. The autonomy theme addresses the ethical handling of donor consent and motivation. The results indicate that Syrian refugees undergo a transplantation process free from coercion, with rigorous oversight by organ transplant ethics committees ensuring the prevention of donor abuse. However, despite these protective measures, challenges persist in the informed consent process, primarily due to language barriers that hinder effective communication between healthcare providers and patients. While the efforts of healthcare professionals to assist are recognized as alleviating some difficulties, the broader issues of access to comprehensive health services remain a significant concern. These barriers suggest a need for enhanced linguistic and financial support to improve healthcare accessibility for refugees.

Conclusions

This study posits that the healthcare framework provided by Türkiye to Syrians under temporary protection can serve as a model for international human rights and social justice. However, it also emphasizes the importance of addressing the persistent obstacles that limit healthcare access for asylum seekers. Recommendations for policy enhancements focus on improving language services, increasing financial support, and expanding the accessibility of comprehensive health services to ensure equitable health outcomes for refugees.

Introduction

The Syrian civil war has led to one of the most severe refugee crises in history. The United Nations High Commissioner for Refugees (UNHCR) describes this migration as “the largest wave of migration in recent history [1].” Since the war began in March 2011, 5,082,360 Syrians have sought refuge in countries such as Türkiye, Jordan, Egypt, Lebanon, Iraq, and North Africa. Türkiye, with its “open door” policy, has accepted the largest number of refugees, hosting three million Syrians (62.6%) [2].

Refugees and asylum seekers constitute a vulnerable group that faces numerous challenges stemming from social, cultural, economic, and political factors in their host countries [3]. These challenges include poor economic conditions, unhealthy housing, hygiene and malnutrition issues [4], education barriers, health service access, employment difficulties, language barriers, social exclusion, and discrimination. Access to healthcare is particularly critical for refugees and asylum seekers. Although it is often assumed that fundamental health needs are equal for everyone, refugees and asylum seekers face greater vulnerabilities regarding this right than citizens of the host country and often have limited access to healthcare services [5]. Health systems vary across countries, leading to differing access for refugees depending on the host nation [6, 7]. For instance, in European countries, healthcare services for refugees are typically restricted to emergencies, and the treatment of chronic illnesses is inconsistent and lacks standardization [8]. In the United Kingdom, refugees and asylum seekers can access primary and secondary healthcare services [9], while in the United States, undocumented immigrants are limited to emergency healthcare; once a patient’s condition stabilizes, their access usually ceases [10]. In Türkiye, Syrian refugees under temporary protection receive free primary and emergency health services, as well as secondary and tertiary health services in state hospitals affiliated with the Ministry of Health [11].

Organ transplantation services are often constrained by limited medical resources, with access varying according to the health policies of different countries. The inclusion of foreign nationals, including refugees and asylum seekers, in these services raises numerous ethical debates [12, 13] and presents economic, political, and clinical dilemmas [14]. Key issues include funding for transplantation and treatment, the legal status of refugees, post-transplantation follow-up and treatment, access to organs from cadavers, and the prevention of organ trafficking [14, 15]. These discussions revolve around justice and the responsibilities of healthcare professionals towards vulnerable individuals [13]. There are very few studies on practices for patients in this group [15, 16]. For example, in the United States, insurance coverage for organ transplantation services provided to immigrants varies by state. While most states cover dialysis and transplantation only in emergencies, some states offer broader coverage [17,18,19]. In Germany, organ transplants are provided to asylum seekers only in emergencies, whereas those with refugee status receive dialysis services and are placed on the organ transplant waiting list based on medical indications and decisions by the organ transplantation council. The coverage of organ transplantation costs is determined by the competent health authority [16]. In Poland, Ukrainian refugees receive free dialysis and organ transplantation services. In Lebanon, Syrian refugees can receive organ transplants from cadavers, but the costs are borne by the organ recipient [20]. In Jordan, 25% of patients were unable to receive dialysis for more than a week due to financial difficulties and challenges in locating a dialysis center [21]. Organ transplantation significantly enhances the quality of life and saves lives, yet it psychologically and socioeconomically impacts recipients, donors, and their families. Existing literature indicates that both organ recipients and donors often face financial difficulties during the pre- and post-transplant periods [22,23,24]. Many recipients and donors take unpaid leave for evaluations related to transplant eligibility, surgery, and recovery, resulting in financial burdern incurred due to travel, accommodation, and meal expenses [25, 26]. Studies conducted in the United States have shown that undocumented immigrants face financial challenges not only due to medical costs associated with transplantation but also due to costs associated with transportation, travel, lost wages, and accommodation expenses [27, 28].

In Türkiye, foreigners generally cannot benefit from cadaver transplantation services but can access living donor organ transplantation services. Since 2015, Syrians with temporary protection status have been able to receive this service free of charge.

In Türkiye, 31 out of 52 liver centers and 43 out of 75 kidney transplant centers can provide services to Syrian refugees under temporary protection. Istanbul has the highest number of transplant centers actively serving Syrians, with 10 kidney and 6 liver transplant centers as shown in Table 1 [29]. Transplant centers provide organ transplantation services to both pediatric and adult patients.

Table 1 Number of kidney and liver transplants in Turkey since 2016–2023

Literature on the challenges and ethical dimensions of organ transplantation for refugees and asylum seekers is limited. No studies have specifically addressed the ethical issues and value problems encountered by Syrian refugees in Türkiye while receiving organ transplantation services.

Therefore, this study aims to explore the experiences of Syrian organ recipients and donors under temporary protection during the organ transplantation process and to examine the ethical issues specific to Syrian refugees in Türkiye.

Research questions

• 1. What specific challenges and experiences—medical, social, and ethical—do Syrian refugees face throughout the organ transplantation process?

• 2. How do the ethical issues faced by Syrian refugees regarding organ transplantation compare with those typically encountered by living donor transplants, particularly concerning autonomy, informed consent, and justice?

Methods

Study design

This qualitative descriptive study employed the phenomenological method, conducting semi-structured, in-depth interviews (supplementary file) with Syrian organ recipients and donors who underwent living donor liver and kidney transplants. The aim was to explore their experiences during this process and examine the ethical issues specific to organ transplantation among Syrian refugees, as perceived through their experiences [30].

Research setting

There are ten public hospitals with kidney transplant centers and six liver transplant centers serving Syrians under temporary protection in Istanbul [29]. At the time of the study, one liver and six kidney transplant centers were actively providing transplantiation services for Syrian refugees in Istanbul. The three centers with the highest number of organ transplants for Syrian refugees were selected for the study.

Participants

The study included 27 Syrian participants under temporary protection status, comprising 13 organ recipients and 14 organ donors. Before this study, the researchers had no prior acquaintance or relationship with the participants.

Inclusion criteria

Participants were either organ recipients or donors who had undergone transplantation at organ transplant centers in Istanbul and were not experiencing pain, suffering, or distress that would impede participation in the interview.

Exclusion criteria

Individuals who did not volunteer to participate in the study or were under the age of 18 were excluded.

Data collection

A purposive sampling with a homogeneous approach was used to explore differences and similarities among the participants’ experiences. Interviews were conducted with 27 Syrian liver and kidney transplant recipients and organ donors under temporary protection. Data collection ceased upon reaching data saturation. Participants were approached during their follow-up visits at the outpatient clinic and invited to join the study verbally, with the assistance of an Arabic-speaking interpreter. They were provided with an information form in Arabic, and those who agreed to participate were thoroughly briefed by the researcher with the help of the interpreter.

Interviews were held at locations convenient for the participants. Prior to the interview, participants signed a consent form in Arabic, were informed that their participation was voluntary, and that they could withdraw at any time. The Ministry stipulated that the study be conducted with the utmost sensitivity to the principle of confidentiality as outlined in Article 94 of Law No. 6458 on Foreigners and International Protection and Article 51 of the Temporary Protection Regulation (Decision No. 2014/6883). Due to the conditions stipulated by the Ministry of Interior’s Directorate General of Migration Management, interviews were not audio recorded; instead, the researcher (DB) took detailed notes. The interviews were conducted with the aid of an experienced translator who has worked on European Union projects involving Syrian refugees, holds a translation certificate, and serves as a simultaneous interpreter for a state television channel. The translations were recorded directly onto a computer, and immediately after the interview, the notes were verified with the translator for accuracy.

Interview questions were asked flexibly rather than strictly following the interview protocol (Supplementary Material 1). All interviews were conducted with participant consent, adhered to confidentiality rules, and were supplemented by field notes taken by the researcher. Interviews varied in length from 40 to 140 min and were conducted in Arabic and Turkish. Although most interviews were in Arabic, four participants opted for Turkish, with an interpreter present to assist if necessary. Interpreters also helped participants express themselves when they had difficulty. One scheduled participant did not attend their interview, and two participants were interviewed twice. The notes from each interview were reviewed with the interpreter immediately afterward to ensure accuracy and clarity.

Interview questions

For organ recipients:

• “Can you describe your experiences from the onset of your illness to the decision to undergo a transplant?“.

• “What did you go through during the pre-operative preparation, the surgery itself, and the aftercare process?“.

• “Could you share your experiences during the post-transplant follow-up process?”

For organ donors:

• “How did you find out that you could be a donor, and what led to your decision to donate?“.

• “What were your experiences during the pre-operative preparation, the surgery, and the aftercare process?“.

• “Can you describe your experiences during the post-transplant follow-up period?”

Additional probing questions were utilized based on responses to these initial questions to deepen the understanding of each participant’s experiences.

Data analysis

The analysis was conducted based on the interview notes meticulously written by the researcher. Two independent researchers analyzed the written records of the interviews. The analysis began by identifying the data unit, referring to meaningful segments within the data. Both the interview logs and field notes were thoroughly read. During this reading process, the researchers annotated the texts with notes, comments, observations, and questions, from which they generated initial codes [30].

Subsequently, these codes were examined for interconnectedness, and coherent themes representing meaningful integrations of the data were developed. To ensure a deep understanding of the data, the researchers engaged in repeated readings of the interview texts during the thematic analysis. Data analysis was conducted by two independent female researchers of the same age: DB (PhD, TC), a specialist in the History of Medicine and Ethics, and an Organ Transplant Coordinator, and AA (PhD), an Associate Professor of the History of Medicine and Ethics.

Although no significant disagreements arose between the researchers regarding the identification of codes and themes, they engaged in in-depth discussions throughout the process to ensure that the data was interpreted uniformly. In cases where there was potential for different interpretations, the researchers reviewed the data together and carefully considered alternative viewpoints to reach a consensus. This collaborative approach, along with the involvement of an independent expert when necessary, helped ensure the reliability and validity of the analysis.

Reporting the data

The COREQ checklist was used for clear and comprehensive reporting of the qualitative research [31].

Reliability

The reliability of the study was ensured through several key steps. The coding process was conducted by independent researchers, and consensus was reached on the identification of themes. To further strengthen the reliability and validity of the research, an expert review was conducted by a transplant surgeon and a medical ethicist, who evaluated the entire research process and confirmed that the findings were adequately supported by the data.

Nevertheless, this study acknowledges potential biases that may have influenced our interpretations, particularly regarding preconceived notions about organ transplantation and personal beliefs about healthcare access. For instance, one of the researcher’s experience as an organ transplantation coordinator might have led them to develop empathy towards participants, affecting objectivity in assessing their challenges. To mitigate this, we conducted regular group discussions to ensure diverse perspectives were considered and held a reflection session at the study’s outset to identify biases. Additionally, evaluations by an independent ethicist and a transplant surgeon enhanced the study’s objectivity and credibility.

Data saturation was achieved through interviews with a sufficient number of participants, and any discrepancies that arose during the thematic analysis were resolved through discussions among the researchers, as outlined in the Data Analysis section.

Since participant information was kept confidential and anonymized in accordance with ethical guidelines, it is important to acknowledge that the absence of audio recordings—due to restrictions imposed by the Ministry of Interior—may have affected the full capture of participants’ emotions, thoughts, and expressions. However, to ensure accuracy, interviews were conducted with the assistance of a sworn translator, and detailed notes were taken. These notes were immediately reviewed and cross-checked with the translator to ensure accuracy, minimizing any potential loss of meaning during translation.

Participant anonymity

Participants were anonymized using a coding system that included their assigned number in the study, gender, and status as either organ recipients or donors. For example, “1RM” (participant number 1, organ recipient, male); “2RF” (participant number 2, organ recipient, female); “3DM” (participant number 3, organ donor, male); “4DF” (participant number 4, organ donor, female). Additional details such as the hospitals and cities where the participants received treatment were anonymized and represented as ellipses (…). All clarifications or additions made by the researchers in the analysis were enclosed in parentheses (…).

Results

Description of participants

Thirteen participants were organ recipients, and fourteen were organ donors. The average age of the organ recipients was 33.7 years. Among them, ten were male and three were female. Twelve recipients underwent kidney transplants, and one underwent a liver transplant. Eight recipients were married, all were unemployed, and most knew little or no Turkish. Seven recipients had more than one child, eleven received financial assistance, and all were literate in their native language, Arabic.

The average age of the organ donors was 42.2 years. Six of the organ donors were female, and eight were male. Twelve donors donated kidneys, and two donated livers. Twelve of the donors were married, ten had little or no proficiency in Turkish, nine were employed, and eleven had more than one child. Eight of the donors were high school graduates. Regarding relationships to the recipients, six donors donated organs to first-degree relatives, four to second-degree relatives, and four to their spouses.

Upon evaluating the ethical issues faced by Syrian refugees in organ transplantation, two primary themes emerged from the data: (a) Justice, encompassing both the pre-transplantation and post-transplantation processes, and (b) Autonomy, focusing on the transplantation center process. These themes and their corresponding sub-themes are summarized in Table 2.

Table 2 Example of data analysis

Ethical issues related to justice

Ethical issues related to justice are observed both in the pre-transplantation phase and in the post-transplantation phase. The findings indicate that both organ recipients and donors encounter difficulties in accessing health services due to migration and language barriers, and a lack of information complicates their ability to reach the transplant center and engage in follow-up care. Additionally, financial constraints and restrictions on free movement pose significant challenges. However, it is noted that there are no issues in accessing organ transplantation services and medications, which are provided free of charge.

Some participants stated that they migrated due to illness. “…when hospitals started to be attacked, I got scared, and when I couldn’t go to the hospital, I applied to Türkiye. I wanted to go to Türkiye and get treatment.” (8RF).

The language barrier prevents access to healthcare services during the process of reaching the transplant center. “…I went to the doctor, but I couldn’t go to dialysis for 10–15 days because of the language problem…” (12RM).

The lack of interpreters or an insufficient number of them causes difficulties in communication during the medical follow-up process and post-transplant follow-up. “There was no interpreter in the (…) hospital… Sometimes we communicated by signs.” (12DM).

The language barrier and lack of information made the process of reaching the transplant center difficult. “We had a Turkish friend, we asked him, he got it on the phone…we made an appointment with the nephrology department.” (3RM) “…nobody gave us information for 3–4 years that you could have a transplant. I saw patients while they were on dialysis, saying, ‘look, this transplant has happened, look, this transplant will happen.’” (3RM).

The poor socio-economic conditions of Syrian refugees are a significant source of difficulty in reaching the transplant center and during medical follow-up. “…my husband was borrowing money from his siblings…getting tested and traveling were difficult for me.” (4RF).

Due to the restriction on free movement, refugees stated that they had difficulties in reaching the transplant center and obtaining referral and permit documents during the medical follow-up process. “There is a problem in getting a referral from (…) where I reside to (…) (the hospital in the province where the organ transplant was performed)… First, I need to get a permit from e-government…” (2RF).

In comparison with the Syrian health system, refugees generally stated that the health system in Türkiye was more successful. “A good system in terms of medicine and treatment… God willing, we need to talk honestly; there is a huge difference between the system here and the system in Syria.” (11DM).

However, they have difficulty receiving organ transplant health services due to inadequate translation services and the distance of accommodation and dialysis centers. “…vehicles can be arranged for patients, for example, for those whose homes are far away…” (9RM).

Most refugees stated that they paid for organ transplants and medicines in Syria and that organ trade was taking place. “…you cover the cost of medicines and half of the hospital stay. You pay for the medicines after you are discharged…” (10RM) “…you have to pay the person who donates organs…” (6RM).

All refugees stated that they had free access to organ transplantation services and medicines in Türkiye and did not pay out of pocket. “We did not pay for organ transplantation. I can easily access all my medicines… I get my medicines from the pharmacy.” (11RM).

Additionally, bureaucratic facilitation is provided for them to receive organ transplantation services. “My mother came here from Syria… I got a report due to my illness and got an ID for my mother. They gave (her ID) here, thank you.” (5RM).

Ethical issues related to autonomy

Ethical issues concerning autonomy were primarily identified within the context of the transplant center process for Syrian refugees. The data reveal that there were no issues regarding the motivation and decision-making processes for donors and recipients; decisions to donate were made freely, without any pressure or coercion. However, discrepancies arose in how information was presented and understood prior to the decision to become a donor and during the informed consent process. While there were no difficulties reported in dealing with the ethics committee, the quality of treatment and care was compromised by language barriers. Nonetheless, the overall experience with healthcare professionals was positive, reflecting their helpfulness throughout the organ transplant process.

When the motivation and decision process of the donor/recipient is examined, it is seen that organ donors make their decisions and donate organs without pressure or coercion. “…I love my sister very much, giving a part of myself to my sister is priceless…” (4VDM).

Most donors stated that they decided to donate when they first heard about the option of being an organ donor. “(Smiling) If I were to think about it, I would not have started the examinations. I never refused to donate an organ from the beginning…” (2DM).

Recipients had a very hard time deciding to have an organ transplant, worrying about the health of their donors and being in a dilemma. “I was afraid for my brother’s health… I wondered if there would be a risk in time (he sighed and smiled) and on the other hand, I needed this because I was very tired from dialysis.” (7RM).

Some donors stated that they were informed about the process by doctors when they applied to the transplant center. “…doctors also… explained all the risks… they would give information in every detail whenever we went to the doctor…” (9DF).

Some stated that they were informed about the surgery after all the tests for transplant suitability were completed. “Nobody… mentioned the donor’s risk of surgery or the surgery, we said we want to have a kidney transplant, they said okay, let’s start the tests, and we started the tests…” (5DF).

During the informed consent process, most refugees stated that they were informed with an interpreter, the consent forms were in Arabic, and they understood the information given. “…there was a doctor and interpreter other than the hospital’s interpreter… they talked about all the risks and details… they said the kidney would only be valid for one, two, or three years. I said we have no other alternative.” (13DM).

Some stated that they were not informed and went into surgery without knowing the process. “…we were given paperwork to sign, but no one sat down and explained to us the risks of the surgery and how the surgery would be…” (3RM).

In Türkiye, before organ donation or transplantation can proceed, an ethics committee reviews the case to ensure that the donor is acting voluntarily and without coercion. This process safeguards the donor’s autonomy and helps prevent unethical practices, such as organ trade. All refugees reported experiencing no difficulties during the ethics committee process, and they were accompanied by a sworn translator throughout the proceedings. “We entered the interview separately. They asked my mother if she was mentally stable, how many children she had, did they give money for this surgery, asked their birth year.” (4RF).

However, some refugees encountered difficulties in preparing their documents for the ethics committee. “…You do not have a record here because you are Syrian… no kinship paper, no family book… we came from war…” (1DM).

Once refugees reached the transplant center, they encountered fewer issues with the quality of treatment and care regarding organ transplantation services. However, they faced significant difficulties at every stage of the transplantation process due to language barriers. “…the biggest barrier I faced was not knowing the language and not knowing where to go.” (8RF).

Some participants received interpreter services from family members, relatives, neighbors, or by paying a fee since there were no interpreters in hospitals. “I had a relative who was coming, but it started to be difficult for him too… he was coming to the hospital every day.” (13RM).

Despite the presence of interpreters in some hospitals, their insufficient number was a significant factor in the persistent language barriers. “…I always had an interpreter with me because even if the hospital had interpreters, they were always busy…” (13DM).

Some participants reported that interpreters made incorrect translations due to their lack of professionalism and insufficient knowledge of medical terminology. “…the doctor told us to bring him every month, his condition is critical. But the translator translated it as, ‘Your condition is normal; come for a check-up in three months’… The translator translated it wrong.” (13DM).

Refugees encountered fewer issues after arriving at the transplant center, thanks to the helpfulness of healthcare workers. “…if we did not understand what to do or what not to do… the organ transplant coordinator would call the nurse for the ultrasound, for example, the nurse would pick us up and take us there…” (6DF).

Similarly, the support of health workers in the post-operative period was seen as a comforting factor. “The nurses and doctors were helpful… they took good care of me, as if I were his brother.” (2RF).

Discussion

This study aimed to explore the experiences of Syrian organ recipients and donors under temporary protection status in Türkiye, focusing on the organ transplantation process and the ethical issues specific to Syrian refugees. The findings indicated that participants generally faced poor socioeconomic conditions, relied on financial assistance, and lived in large families, with some being unemployed. Literature similarly notes that refugees and asylum seekers often reside in large family units in host countries, contending with economic hardships, unhealthy living conditions, and issues such as inadequate hygiene and malnutrition [32,33,34]. These conditions were also echoed in a study conducted with Syrian refugees in Türkiye [35].

When analyzing the data concerning ethical issues related to justice, several participants noted that their migration to Türkiye was prompted by health needs. Existing literature indicates that following the onset of conflicts, health services, including organ transplantation, became increasingly unavailable due to attacks on healthcare facilities, the killing of healthcare workers, and the mass exodus of medical personnel [36, 37]. While seeking health services as a migration motivation has been documented in previous studies [38] our research uniquely contributes to this discourse by specifically exploring the impact of these health-related migration motivations in the context of organ transplantation among Syrian refugees, highlighting the unique challenges and ethical considerations they face.

Refugees face challenges accessing healthcare due to unfamiliarity with Türkiye’s health system, unawareness of their rights to organ transplantation services, and difficulties in navigating to transplantation centers. Similar challenges have been documented in other studies with Syrian refugees [39, 40]. To overcome these obstacles, refugees often sought information from friends, neighbors, doctors, and translators, as highlighted in a study by Torun et al. conducted with Syrian refugees in Türkiye [41]. van Overdijk et al. have indicated that misunderstandings and knowledge gaps exist regarding the transplantation process and related procedures for migrants seeking access to kidney transplantation [42]. In our study, participants also highlighted that healthcare professionals’ lack of knowledge about the regulations concerning Syrians poses a challenge to accessing healthcare services. It is noteworthy that similar findings have been reported in the literature [15, 43]; for instance, in a multicenter international survey conducted by Van Biesen et al., few nephrologists working across 298 dialysis centers reported that they were unaware of the regulations related to refugees [43]. Being aware of such stipulations is crucial for a better understanding of the barriers to accessing healthcare services and for developing potential solutions.

Some participants reported difficulties in scheduling hospital appointments due to language barriers, often relying on Turkish-speaking relatives for assistance. Similar challenges have been documented in studies involving different groups of Syrian refugees worldwide [39, 44, 45]. Studies addressing refugees’ access to organ transplantation services emphasize that language barriers complicate access to these services [8, 42, 46]. In this study, some participants indicated that the lack of professionalism and knowledge of medical terminology among interpreters resulted in inaccurate translations, which led to misunderstandings and communication issues with healthcare professionals. The use of untrained interpreters who are not proficient in medical terminology in providing organ transplantation services to refugee and asylum-seeking patients contributes to incomplete and incorrect translations, a lack of comprehensive understanding, and difficulties in communication [46]. The language barrier also complicates the process of obtaining medications and prescriptions. Participants mentioned needing help from relatives when interacting with pharmacies. This issue is consistent with findings of other studies on refugee and asylum seeker groups, which also report difficulties in accessing medications due to language barriers [47, 48].

In Türkiye, state hospitals provide organ transplants and associated medications free of charge to Syrians under temporary protection [11]. Participants highlighted that they incur no costs for organ transplants or medications and noted the bureaucratic ease in evaluating medical suitability for donor candidates residing either outside the country or in different provinces. Comparatively, a study in Austria found that undocumented immigrant children receive similar access to free organ transplant services and medications [49]. In the United States, however, insurance coverage for organ transplant services for immigrants varies by state, with most states only covering dialysis and organ transplant fees in emergency situations [17, 19].

Research on undocumented immigrants indicates that many cannot afford organ transplants due to financial constraints and a lack of resources for covering transplant costs. This situation is compounded by health policies that restrict access to services, leading to organ and patient losses due to uninsured follow-up treatments and immunosuppressive medications [17, 27]. In contrast, our study participants did not face any financial hurdles in accessing organ transplant services, highlighting a significant advantage in Türkiye’s healthcare provisions for refugees. However, it’s important to note that access to transplant services can vary significantly in other countries. For instance, in Germany, organ transplantation for individuals seeking asylum is only performed in urgent and life-threatening situations, allowing for inclusion on the waiting list under such circumstances. Individuals with refugee status can access dialysis services, but their inclusion on the organ transplant waiting list depends on medical indications and the decisions made by the transplant council. The relevant health authority ultimately determines whether the costs of organ transplantation will be covered [50].

A study by Raghavan et al. on migrants reported that patients undergoing dialysis experienced worsening health conditions and faced financial difficulties, which increased their reliance on emergency services [51]. Additionally, a multicenter study by Van Biesen et al. found that the majority of registered refugees with legal residence permits in countries where they sought asylum had their dialysis costs covered by national and regional authorities, with only a small proportion of these costs borne by hospitals or the patients themselves [43]. In Italy, legal migrants enjoy equal access to organ transplantation and dialysis treatment as Italian citizens. Moreover, undocumented migrants with kidney failure can access dialysis services, apply for residence permits, and benefit from healthcare services [52].

Participants pay out of pocket for transportation, notary services, translation, and accommodation throughout the organ transplantation process, with some even changing cities to continue their follow-up and treatment. Our findings align with results from studies conducted with Syrians suffering from various diseases worldwide and in Türkiye [33, 53]. Similar patterns are also observed in the literature regarding organ transplants for both undocumented immigrants and citizens of the country [24, 27]. Additionally, studies with Turkish patients who have undergone organ transplants reflect comparable results [54]. Research on migrants has indicated that travel and medical expenses related to live donor surgery and follow-up processes are not covered for donors who do not reside in the host country [42]. However, it has been reported that out-of-pocket payments for organ donors are covered in Canada [25]. These ethical concerns are further complicated by the challenges faced by refugees and non-resident donors in obtaining regular treatment and follow-up care upon returning to their home countries, as well as their access to immunosuppressive medications [14, 15, 50, 51, 55,56,57].

The limited right to free movement causes Syrian refugees to have difficulty accessing transplantation services. Different studies conducted in Türkiye have also reported problems accessing health services [58]. In recent years, this problem has been addressed by providing the permit document that must be obtained from the immigration administration online. It is known that there is a referral system in many countries, as in Türkiye [39].

Participants stated that they were able to get an appointment date very late to be examined. However, this is not unique to refugees, as Turkish citizens also experience similar delays due to patient volume [59, 60]. Although there is no statistical data, it can be inferred that this is not a situation experienced solely due to being Syrian.

Refugees stated that the healthcare system in Türkiye was much more successful than in Syria. However, difficulties in receiving healthcare services persist due to inadequate interpreting services, housing problems, the distance of dialysis centers, and appointments being scheduled for later dates. Similar results were reported in studies conducted with different Syrian patient groups [61].

Participants stated that organ trade was taking place in Syria. Although organ trade is prohibited in Syria, it was reported that organs were purchased from living donors, both relatives, and non-relatives [37, 62, 63].

When evaluating the data concerning ethical issues related to autonomy, it was found that donors were relatives or spouses of the recipient, and their motivation for donation stemmed from a sense of responsibility towards the family and a desire to help the recipient and alleviate the negative effects of the disease. Our findings are consistent with results from studies involving donors who were related to the recipient and had an emotional bond [64, 65].

Patients expressed concern for the health of their donors while simultaneously wanting to regain their own health, making the decision to have an organ transplant very difficult. Our findings align with the literature [66, 67].

Organ donors reported making the decision to donate without much initial contemplation and did not regret it, starting tests for preparation soon after. These findings are consistent with results from other studies [68, 69]. However, some studies, unlike our findings, have defined internal and external pressures influencing donors’ decisions and reported cases of donor regret [70].

Organ recipients reported difficulties understanding the process due to insufficient information provided about the transplantation process, possible complications, and benefits of treatment during the diagnosis and preparation phase. Getchell et al. reported that many patients with renal failure were not sufficiently informed about treatment options and living donor transplantation [71]. In a study conducted by Oztek-Celebi et al., families of migrant children who underwent kidney transplantation had a lower level of knowledge regarding organ transplantation than families of non-migrant children. Additionally, healthcare professionals typically provided information about organ transplantation later than desirable. Contrary to our study, the use of other information sources, such as mass media, to obtain information about organ donation was significantly lower among migrant families [72].

Most participants stated that information was provided during the informed consent process with an interpreter, that risks were explained, and that they understood the information provided. Some reported that consent forms were in Turkish, that there was no interpreter, and that they did not understand the risks. In a study conducted by Hunter-Adams et al. with migrants, some participants reported that due to language barriers, healthcare professionals did not provide information or that consent was obtained without understanding the information given [73]. In a study by Morris et al. involving refugees, patients indicated that they had difficulty understanding the information provided in the consent form [74]. Yazar et al. emphasized in their study with anesthetists that the preoperative information provided was inadequate and that patients did not fully comprehend the information presented. Half of the participants stated that the informed consent forms were in Turkish, which led to a lack of understanding among the patients [75].

Studies have shown that organ donors have significant information deficiencies [76]. It has been reported that although most organ donors make their donation decisions quickly, they need more information, do not feel informed, have limited information about surgery and risks, do not care much about the risks explained, and perceive them as lower than they actually are [77,78,79]. It is questioned whether this lack of information is due to insufficient information given by healthcare professionals, failure to understand or remember details, or selective filtering of information [79].

The use of digital tools such as videos prepared in patients’ native languages, informational brochures, visuals for medication usage, and anatomical models can enhance patients’ understanding of information. In a systematic review conducted by Gesualdo et al., it was found that written materials (such as informational brochures), audiovisual tools (including videos, multimedia presentations, and anatomical models), and interactive digital applications (such as computer, web, and mobile phone applications) significantly improve patients’ ability to comprehend information during the informed consent process [80]. Moreover, the gathering of transplant recipients and donors who speak the same language and share similar cultural backgrounds can facilitate a better understanding of the organ transplantation process, thereby reducing their anxieties. In our study, one participant indicated that they had spoken with individuals who had previously undergone transplantation to better comprehend the process. Similar findings have been reported in other studies. Schick-Makaroff et al. emphasized that kidney donor candidates benefited from discussions with individuals who had donated kidneys, as this interaction alleviated their surgical concerns and enhanced their understanding of the transplantation process [78]. Additionally, Birtan and Akpınar reported that healthcare professionals facilitated meetings between organ recipients and donors and patients who had undergone transplantation in the ward improved their understanding of the transplantation process [57].

The risk of organ donation under pressure, organ trafficking, organ trade, and organ smuggling poses ethical concerns for vulnerable and poor populations, including asylum seekers and refugees [14, 15, 46, 81]. According to Article 13/10 of the Organ Transplant Regulation (2022) in Türkiye, all Syrian organ recipients and donors under temporary protection status are evaluated by the organ transplantation ethics committee. When it is concluded that there is no unethical or illegal situation between the recipient and the donor, the ethical suitability of the transplant is decided. Participants reported undergoing evaluation by the ethics committee, where kinship relations and the voluntariness of donor donations were questioned. In many countries, legal regulations prohibiting organ trafficking and trade have been established. Various methods are employed to ensure the voluntariness of donors and verify familial relationships in live donor transplants. In some nations, live donations are authorized based on court decisions, while in others, this process occurs under the supervision of a regulatory body [82]. For example, in China, all organ recipients and donors, regardless of familial ties, undergo evaluation by ethics committees [83]. It has been reported that the determination of the donor’s voluntariness and the legality of the relationship between the recipient and the donor by organ transplant ethics committees reduces ethical concerns [57, 83].

It has been noted in the literature that asylum seeker/refugee patients who left their country due to war have difficulty documenting their kinship with their organ donor [46]. Some participants in our study reported difficulties documenting their kinship due to the war.

Limitations

The study was conducted with Syrian organ recipients and donors at the three most active organ transplant centers in Istanbul. While this approach provided insights into the experiences of Syrians undergoing transplants in diverse institutional settings, it is important to recognize that experiences at other centers, especially in different provinces, might vary significantly.

A key limitation was the use of a sworn translator during interviews, coupled with the absence of audio recordings, relying solely on the researcher’s written notes. This approach might not have fully captured the depth of the participants’ emotions, thoughts, and expressions. Nevertheless, the potential impact of this limitation was mitigated by the translator’s proficiency and the immediate review of interview notes with the translator post-interview, ensuring a more accurate reflection of the discussions.

Conclusion

Syrians under temporary protection status encounter significant challenges in accessing healthcare, similar to those documented globally among refugees. These include language barriers, unfamiliarity with the healthcare system, poverty, and restricted movement, which collectively hinder social justice in healthcare access. Being in need of an organ transplant but unable to access healthcare services due to poverty and restricted mobility creates significant barriers to receiving timely and equitable care. While patients without such limitations can more easily attend follow-ups and access necessary resources, refugees often face delays or difficulties in accessing transplant services. This disparity highlights an issue of justice, as it disproportionately affects refugees’ ability to benefit from organ transplantation. Our study suggests implementing adaptation training and establishing consultancy services in native languages to facilitate better integration and access to healthcare for Syrians, thereby reducing the strain on both individuals and healthcare providers.

In our study, healthcare access emerged as a migration driver, underscoring the need for international and national policies to support healthcare workers and refugees amid intense migration periods. Türkiye stands out by providing free living donor services and immunosuppressive drugs post-transplant to Syrians, showcasing a model that could inform international policies on social justice and healthcare access.

A critical ethical issue in living donor transplants is ensuring the voluntariness of the donation. Our findings confirm that donor decisions were voluntary, without any coercion, and motivated by familial and cultural reasons. However, variations in the consent process call for further investigation to determine if discrepancies are due to a lack of standardized practices or individual perceptions.

Lastly, while Syrians benefit from some free healthcare services, out-of-pocket costs remain a pervasive issue, not unique to refugees but also affecting citizens globally due to poverty. Recommendations include employing more translators, enhancing support during the ethics committee process, and facilitating bureaucratic processes to improve access to healthcare. This research aims to guide the development of international policies for health systems anticipating new migration waves in the future. Future research conducted by researchers fluent in the participants’ language, utilizing ethically approved audio recordings—especially with participants from diverse regions or varying legal statuses—will enhance our understanding of migrants’ experiences.