Life on a Challenging Path: Understanding Patients' Experiences of Kidney Transplantation, a Qualitative Content Analysis Study

Life on a Challenging Path: Understanding Patients' Experiences of Kidney Transplantation, a Qualitative Content Analysis Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Life on a Challenging Path: Understanding Patients' Experiences of Kidney Transplantation, a Qualitative Content Analysis Study Reza abdollahi, haleh ghavami, Moloud Radfar This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6309249/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Objective : Kidney transplantation is one of the alternative treatments for chronic kidney failure. Various cultural, social, and individual factors can influence patients' experiences of kidney transplantation, which may not be adequately examined through quantitative studies. Therefore, this study was conducted using qualitative content analysis to gain a deeper understanding of the subject. Methods : This qualitative study was conducted using a conventional content analysis approach. Purposeful sampling was initiated and continued until data saturation was reached. The primary method of data collection was semi-structured interviews. A total of 18 participants were interviewed. The interviews were analyzed using the method proposed by Graneheim and Lundman (2004). Ethical considerations were applied at all stages of the study. MAXQDA version 10 software was used for data management. Results : The average age of participants in the study was 47.83 years. From the data analysis, four main categories emerged: 1- Concerns about the future (risk of transplant rejection, physical and bodily complications of the transplant, occupational and social limitations), 2- Emotional and spiritual support from others (increased communication with friends and family after the transplant, material and spiritual support from friends, motivation to expand relationships), 3- Stressful thoughts (feelings of depression, worries about test results, concerns about nutritional care), and 4- Financial problems (high costs of medication and transplant, job loss due to disability and limitations, costs of consultations and periodic tests). Conclusion : Kidney transplant patients face various experiences and issues in both personal and social dimensions after the transplant. Based on the understanding of these experiences, health managers and policymakers can implement interventions to enhance the quality of life and address the problems faced by kidney transplant patients. experience patient kidney transplant content analysis Introduction Chronic kidney disease is considered one of the most important causes of mortality in the 21st century. Given the increase in risk factors such as obesity and diabetes, the number of patients with chronic kidney disease has also been rising, affecting approximately 843.6 million people worldwide in 2017 ( 1 ). There are about 100,000 kidney transplant patients in the United States, and when adding kidney transplants from around the world, this number more than doubles ( 2 ). In Iran, similar to other countries, there has been progress in the field of kidney transplantation, with 3,736 kidney transplants performed in Iran between 2006 and 2014 ( 3 ). The number of deaths following kidney transplantation varies depending on the specific study and time period. One study found that 168 out of 438 patients with successful transplants lost their lives, with the most common causes of death being heart disease, infection, and cancer ( 4 ). Another study indicated that arterial occlusive disease was responsible for 12 percent of deaths among 325 kidney transplant recipients ( 5 ). Additionally, urological complications after kidney transplantation were reported in a study involving 274 transplants, with a rate of 6.2% and no reported deaths ( 6 ). It is important to note that these studies are conducted in different populations and time periods, and the overall number of deaths following kidney transplantation worldwide may vary ( 7 ). Patients face multiple challenges after kidney transplantation. According to Starzl, transplantation is more than just receiving a new organ; it is essential for recipients to change their perspective on the world and to adapt physically, psychologically, and socially to a serious new reality, as there is a deep gap between the reality and the expectations of patients and their families in the post-operative period ( 8 ). Recipients and their families encounter a persistent and new problem. They must certainly adhere to a complex treatment regimen, which includes a medication regimen, lifestyle changes in terms of nutrition, exercise, and weight control. Additionally, they will also be treated with immunosuppressive medications ( 9 ). On the other hand, these patients face multiple stressors in every aspect of life, including family problems, changes in sexual function, dependence on others for daily living, social isolation, changes in body image, psychological pressures, and the threat of death. The individual's roles and health status are affected, and in the long term, there is a decline in quality of life and the emergence of physical and psychological problems ( 10 ). Folkman and Lazarus have defined these factors as external needs, which the individual perceives as challenges and must learn to adapt to using internal or external coping strategies ( 11 ). Larsen writes that transplant recipients, due to their experience with a chronic condition, are never completely cured and require long-term management of their illness and associated discomfort, treatments, and follow-ups ( 12 ). Addressing the experiences of kidney transplant patients leads to a better understanding of the challenges these patients face in the realm of chronic diseases, and it will also enhance our ability to comprehend the nature of these problems, experiences, and their changes. Furthermore, given the increasing prevalence of kidney diseases and the subsequent rise in kidney transplant statistics, studying the experiences of kidney transplant patients and proposing potential solutions within the academic system seems essential. Since uncovering the hidden dimensions of these patients' experiences cannot be achieved through quantitative research and is more compatible with qualitative approaches, health organizations and policymakers in the field of kidney diseases can benefit from the results of this research in planning and decision-making. The aim of this study was to examine the experiences of patients regarding kidney transplantation. Methods Design and sampling This qualitative study utilized conventional content analysis. The participants in this research were kidney transplant patients selected from the kidney transplant department of Imam Khomeini Hospital in Urmia, as well as outpatient clinics for kidney transplant patients in the city of Urmia. Sampling was conducted purposefully and with maximum diversity, considering the age, gender, education level, ethnicity, and economic status of the participants. The inclusion criteria included patients over the age of eighteen, those with a history of kidney transplantation, and the ability to communicate verbally and share experiences. Data collection To collect data, semi-structured in-depth interviews were conducted from Farvardin to Khordad 1403 by the researcher (R.A, a Ph.D. candidate in nursing) at a time and place preferred by the participants. The interviews were guided by several open-ended questions such as "What is your experience with kidney transplantation?" and "What is life like after the kidney transplant?" Additionally, probing questions were used to gather deeper data about the participants' experiences. Examples of these questions included: "Can you elaborate on that?" and "What do you mean by that?" At the end of each interview, participants were asked if they wanted to add anything else. Also, during the interview, all the non-verbal behaviors of the participants, including body movements, facial expressions, tone of voice, emotional reactions, and expressions of emotions, were recorded by the researcher in order to better explain the interviews. All interviews were conducted in a quiet and private room in the study environment. The time and duration of the interviews were adjusted according to the preferences and physical conditions of the participants. If the participants felt fatigued, the interviews would be interrupted. The duration of the interviews varied between 35 to 45 minutes, with an average of 40 minutes, depending on the different conditions of the patients. Data collection continued until saturation of information was reached. The interviews were recorded and managed using the MAQDA software. Data analysis Data analysis was conducted using the approach proposed by Graneheim and colleagues (2004) ( 13 ). Data analysis was done by the main investigator (RA) under the supervision of the research team. Inductive content analysis is an inductive process that involves iterative coding. First, the main investigator (RA) transcribed the interviews word for word and codes used to label the data was created during the coding process based on the actual content of the data set. In this research, the codes were identified by the researcher within the data itself, or as it is often said, “emerged” and the codes are or “emerged” from the data. The coding process was not done just once for each transcript, but was refined and then repeated based on comparisons between transcripts. Each transcript was coded several times with more detailed repetitions. Since the coding was inductive and by analyzing more transcripts, new aspects of the data were identified, this recoding was repeated and new codes were identified. It is very common for ideas identified in later transcripts to be present in earlier transcripts, perhaps in more indirect ways, but not recognized when those transcripts were first coded. Therefore, the researcher added to the list of codes and adapted it during the analysis process. The coding process, following the comparison, grouping and division of groups of codes, led to categories and subcategories. Participants’ quotes (initial codes) were grouped and summarized based on similarities, and dense codes were obtained. Then the dense codes were categorized based on the area and similarity and formed sub-categories. And sub-categories were formed based on the subject area of categories and then categories particle for themes. It is necessary to explain that the data obtained from the interviews of formal service providers were analyzed simultaneously with women of reproductive age. Finally, the dimensions and areas of the themes of mental health literacy in reproductive age women were determined. Trustworthiness According to the definition of Lincoln and Goba (1986), the well-known criteria for evaluating the validity and reliability of qualitative data include credibility, transferability, dependability and confirm ability were used ( 14 ). In the present study, to ensure the credibility of the findings, the coded text in the interview was given to the participants to confirm the extracted codes (Member Check) and if there was a contradiction, the necessary investigation was done and clarification was done with the help of the participants’ opinions. In addition, key informants including psychologists, psychiatrists and counselors were used in order to use their experiences. The interviews were analyzed by the research team. In this way, the problems in the interview process and the coding process were determined. The researcher tried to increase the credibility of the research by spending enough and long time to review the information and data, constantly rethinking the codes and classes and holding numerous meetings with the professors of the research team until reaching a consensus. Also, the integration of different methods of data collection, such as in-depth interviews, note-taking, daily notes, and the selection of participants with the maximum variety of other actions taken in this direction. In order to improve the dependability of the research, he used the precise introduction of the participants and the complete explanation of the data analysis steps to enable the audit of the research. Also, an attempt was made to guide the interview and coding process in line with the research question so that the research findings have a good logic and consistency. In order to improve the confirm ability, the researcher tried to provide a complete and step-by-step explanation of the different stages of the research, from data collection to the formation of sub-classes, classes and topics, so that the review of the research is possible for the readers. Also, the accuracy of the research process step by step, including the process of interviews, coding, extraction of classes and themes, was confirmed by the research team. Finally, in order to improve the transferability, it was tried to provide clear and complete explanations about the research field, experiences and events during the research so that other researchers are also able to judge the research process. Also, participants with maximum diversity in terms of age, level of education, occupation and marital status entered the research. Ethical considerations Participants received written information about the study before agreeing to participate. When meeting the interviewer, they were again given written and oral information about the aim and procedures of the study, that participation was voluntary and that they had the right to withdraw at any time and to choose not to answer a question. They were informed that the interviews would be recorded, and that the data would be kept confidential. Written and oral (recorded) informed consent was obtained from all participants. This study involved no experiments. It was performed in accordance with relevant guidelines and regulations. Results Participants The participants in this study included nine male and nine female kidney transplant patients with an average age of 47.83 years, ranging from 40 to 58. Four were widowed, three were single, and the rest were married. Their education levels varied from illiterate to bachelor's degree. Table 1 shows the characteristics of the participants. Overall findings The findings of the study showed that patients expressed their experiences of kidney transplantation in significantly different ways. Their understanding of kidney transplantation led to the formation of a main category characterized by a critical mix of fear and hope, along with four intermediate categories that included concerns about the future, emotional and spiritual support from those around them, stress-inducing thoughts, and financial problems. These four categories consist of twelve subcategories, which are illustrated in Table 3. 1- Concerns about the future 1–1: Probability of Rejection Most participants in the present study expressed that one of their major concerns was the fear of transplant rejection. This concern was considered one of the most important reasons for patients' reluctance to undergo transplantation before the process began. According to the participants, this fear affected their quality of life and sometimes led to feelings of hopelessness about the future. One of the patients said:"One thing that constantly occupies my mind is the fear that my kidney transplant might be rejected. This thought has impacted all aspects of my life and has made it difficult for me to focus on my daily tasks." (Participant number 3). 1–2: Physical and Physiological Complications of Transplantation Many participants in the study considered the emergence of physical and physiological complications after transplantation, including severe pain and discomfort or infection at the surgical site, as unpleasant experiences following kidney transplantation. Other physical complications included those related to the use of immunosuppressive and corticosteroid medications, which led to outcomes such as early fatigue and reduced physical tolerance for patients. One patient said: "... I can't even walk a hundred meters; I quickly feel lightheaded and have to sit down. I also had severe pain in my legs and back." Participant number 5. 1–3: Job-Social Limitations Participants in the present study reported experiencing job-related problems and difficulties in fulfilling their job responsibilities after undergoing kidney transplantation. This issue, in addition to economic challenges, can lead to increased isolation for patients. Participants expressed a fear of rejection after the transplant, considering it one of the most difficult and exhausting crises of their lives. One patient said: "When you undergo the transplant, it's like being imprisoned; you have to stay at home for a year, and this is unbearable for me. My job involves daily interactions with many people, and I have gotten used to that. Staying at home is really hard for a person." (Participant number 8). 2- Emotional and Spiritual Support from Surroundings 2 − 1: Increased Communication with Friends and Family After Transplan In the present study, the inclination towards family and friends was particularly evident in patients who had experienced dialysis before their transplant and had fewer interactions with others. One of the patients said: "When I was on dialysis, I had a fistula in my arm, and it was a different situation. It was hard to, for example, have relationships or go see your friends, but after the transplant, your spirit gets a little better. I've gained a few kilos and I feel better. I have a better relationship with my friends now; I go to parties. I felt better after the transplant. Before the transplant, it was tough, and I didn't go out much." (Participant number 5). 2–2: Material and Spiritual Support from Friends Some participants in the study stated that they have friends who have supported them in many areas, especially financially and emotionally. According to these patients, the presence of individuals who play a supportive and hopeful role in their lives is one of the most positive and pleasant experiences they have encountered during their treatment and care process. One patient said: "I have a few friends who are always by my side, no matter the circumstances. There have been times when I couldn't reach my family, but these friends have gone above and beyond for me, even covering the costs of my medications and doctor visits. They value me a lot because of my illness; their presence is a great source of strength for me." (Participant number 10). 2–3: Motivation for Expanding Relationships Some participants in the study stated that they had a greater desire to connect with others compared to before their transplant. For various reasons, they expressed increased motivation and interest in interacting with those around them, describing it as one of their positive experiences. "I want to expand my relationships. Dialysis takes up a lot of time. Two days a week, three days a week, depending on the doctor's orders, all your time is consumed by it. On the day you go for dialysis, you spend the whole day there, and even on the day you don’t go, you have to think about what you need to do tomorrow when you won’t be going to dialysis. When a person has a transplant, they take a lot of care, but thank God, it seems like they have a bit more free time. They have more opportunities to go out with friends. I’ve developed a greater interest in my friends; back then, I really didn’t have the patience for anyone." (Participant number 13). 3- Stressful Thoughts 3 − 1: Feelings of Depression Some participants in the study reported that they experienced depression after the transplant procedure. According to these patients, depression can arise for various reasons, such as hopelessness about the future, forced isolation due to the recovery period, and distance from social interactions, as well as work and financial issues following disabilities and limitations after the transplant. One of the patients said: (( after a while in solitude and isolation due to the recovery period, experiences a kind of depression. I don't know, maybe it's the effect of the medications I'm taking. I've become a different person; I no longer enjoy being around others. I used to really want to join the local football team, but I've been so lonely that now I prefer solitude. I feel like connecting with others has become very difficult for me.)) (Participant number 4). 3 − 2: Worries About Test Results Most participants in the study experienced stress regarding the results of periodic tests. These patients undergo periodic tests from once a week to once every two months a year since their transplant, and the follow-up on test results and the stress of whether the results are normal or abnormal was undesirable for the participants. One of the patients said: "While waiting for the test results, one tends to feel a bit stressed about what the results will show. Initially, the tests were done once a week, then every two weeks, then once a month, and now it's every two months. We go for tests every two months to determine how well the kidneys are functioning and whether the prescribed medications need to be increased or decreased." (Participant number 5). 3–3: Concerns about Nutritional Care Adhering to a specific diet and nutritional regimen is of great importance for kidney transplant patients and is closely related to the outcomes of the transplant. Diets that contain protein and minerals at the prescribed levels are recommended for these patients. Most participants in the current study expressed concerns and obsessions regarding the consequences of not adhering to this therapeutic diet. One of the patients said: ((..... When you have a transplant, there are many nutritional guidelines you need to follow. Not everything should be told by the doctor. For example, I don't consume carbonated drinks even once a year, and since I can remember, I haven't eaten fried foods or foods high in salt after the transplant. I've completely eliminated fatty foods as well. These are things that need to be adhered to.)) (Participant number 10). 4- Financial Problems 4 − 1: High Costs of Medications and Transplant Most participants in the current study expressed dissatisfaction with the high costs of medication and the transplant procedure, citing it as one of the biggest problems and limitations in their treatment process. Most follow-up treatments and prescribed medications after a kidney transplant impose significant financial burdens on patients and their families. One of the patients said: "These transplant costs and, worse, the subsequent medications are so high that we are crushed under the weight of all these expenses. We have no financial strength left; we spent everything we had and didn't have on this illness. It seems that the insurance companies and the government don't care about the patients at all." (Participant number 7). 4 − 2: Loss of Job Due to Disability and Limitations Some participants in the study mentioned issues and problems related to their job status after the transplant surgery, stating that after the transplant, they faced challenges such as job changes, lack of career advancement, and job loss. According to the participants, kidney transplant patients often encounter significant physical and mobility limitations after the transplant, which can lead to job loss or instability. One patient said: "All it takes is for them to find out that you had a kidney transplant, and they will fire you on the spot. No one will hire you either; they say you are incomplete and not useful. You are forced to settle for light jobs with low income." (Participant number 7). 4 − 3: Costs of Visits and Periodic Tests Many participants complained about the very high costs of periodic examinations and tests. The cost of transportation, especially for patients coming from surrounding cities to the provincial center, was also a concern. According to the participants, financial support from government organizations and insurance companies for kidney transplants has been limited, which has exacerbated the poor economic conditions of the participants. One patient said: "My problems are not just one or two. Right now, I had to beg and plead with one of my friends to borrow money to come for a doctor's visit. I have no income; I'm just getting by with day labor. The government and insurance companies have left people to fend for themselves." (Participant number 11). Discussion The present research was conducted with the aim of elucidating the experiences of patients undergoing kidney transplantation. Based on the analysis of the data, the initial codes were categorized into four main themes: anxiety about the future, emotional and spiritual support from others, stress-inducing thoughts, and financial problems. One of the findings of this study was the fear of kidney transplantation and the possibility of transplant rejection. The study by Pournikoo and colleagues indicated that the unpredictability and potential for rejection of the transplant were significant reasons for the reluctance of patients with chronic kidney failure to undergo kidney transplantation before the procedure, which aligns with the results of the present study ( 15 ). It seems that one of the main factors contributing to the fear in kidney transplant patients is a lack of awareness regarding self-care and adherence to health guidelines. To address this issue, establishing effective communication with patients and providing them with proper education can enhance health literacy among these patients, resulting in a reduction of their fear regarding the possibility of transplant rejection. Physical and physiological complications following kidney transplantation were among the issues reported by participants. The study by Rosenthal and colleagues indicated that one of the main complaints of patients after kidney transplantation is the side effects of treatment with immunosuppressants, which aligns with the results of the present study ( 16 ). Additionally, the study by Kalantarzadeh and colleagues showed that physical problems associated with transplantation, including fatigue, severe weakness, and numbness in various parts of the body, are also physical issues related to transplantation, consistent with the findings of the current study ( 17 ). To manage physical complications after kidney transplantation, a multifaceted approach combining preventive strategies, prompt intervention, and long-term management is essential. Key complications include urological issues, infections, surgical complications, and drug side effects, each requiring specific management protocols. By implementing measures such as infection prevention and lifestyle modifications, it is possible to significantly mitigate physical complications following kidney transplantation. Another finding of this study was the job-related and social limitations faced by patients after kidney transplantation. The study by Bayabani and colleagues showed that patients after transplantation struggle to maintain their jobs or obtain new job positions, which aligns with the results of the present study ( 18 ). It seems that transplant patients, due to the physical and bodily limitations they experience post-transplant, often face significant challenges in their work affairs. This situation has led to a kind of stigma regarding their disability, causing employers to be reluctant to assign sensitive responsibilities to these individuals. By implementing measures such as providing unemployment insurance for these individuals, allowing remote work, and offering flexible working conditions, this issue can be somewhat alleviated. One of the other findings of the present study is the greater tendency of kidney transplant recipients to connect with friends and family after the transplant. The study by Saidi and colleagues showed that patients spent more time with their family and friends after the kidney transplant and felt more satisfied with their lives, which aligns with the results of the current study ( 19 ). This can be explained by the fact that these patients spent a lot of time before the transplant dealing with treatment and managing side effects, leaving them with less time to dedicate to family and friends. On the other hand, considering the specific conditions of these patients after the transplant and the necessity of caring for them, their dependence on family and friends significantly increases. One of the other important findings of this study is the feeling of depression in patients after kidney transplantation. The study by Mahmoudi and colleagues showed that patients experience severe feelings of depression and are under high psychological stress after kidney transplantation, which aligns with the results of the present study ( 20 ). To explain this phenomenon, it can be said that kidney transplant patients spend a long time in recovery, away from social interactions and activities. Additionally, due to financial constraints and other factors such as the need to monitor test results, adhere to dietary and medication regimens, and the costs associated with transplantation, they experience high levels of anxiety, which can subsequently lead to depression in these patients. By implementing evidence-based interventions, depression in these patients can be largely managed. Approaches such as psychological support, pharmacological treatments, and lifestyle modifications with an emphasis on personal care can be effective. One of the other findings of this study was that financial problems resulting from illness and the exorbitant costs of kidney transplantation were significant factors that led to an unpleasant experience for patients regarding kidney transplants. The study by Akhlaghi and colleagues showed that economic status is an important factor in the follow-up treatment of kidney transplant patients, which aligns with the results of the present study ( 21 ). On the other hand, financial issues can discourage patients from pursuing treatment and necessary tests. The costs of obtaining transplant medications, the expenses of the transplant itself, and post-transplant care are very high. Additionally, the long-term treatment of kidney failure, dialysis, and the employment issues it creates for patients result in most patients not having a suitable economic situation and being unable to afford the costs of transplantation and subsequent care ( 22 ). By implementing measures such as developing insurance services for the costs of follow-up tests for these patients and their periodic visits, as well as considering subsidized medication quotas, significant steps can be taken to alleviate the financial problems faced by these patients. Limitations The mental nature of data collection and the small sample size limit the generalizability of the study's results; however, selecting samples from individuals of different ethnicities and with varying educational, social, and economic backgrounds has made the results of this study largely applicable to similar units. Conclusion The present research showed that the experiences of patients after kidney transplantation include psychological concerns and distressing emotions, emotional and spiritual support from family, stress-inducing thoughts, and financial problems. Attention from health and treatment managers and policymakers to these issues and concerns, along with efforts to address and mitigate them, can help facilitate a quicker recovery for patients and their reintegration into life and society. It is suggested that future research should focus on the experiences and challenges faced by families, especially the primary caregivers of kidney transplant patients who have the most interaction with these patients. Declarations Conflict of Interest The authors declare that there is no conflict of interest regarding the present research. Ethics approval and consent to participate This article is part of a PhD thesis that was conducted after obtaining ethical approval from Urmia University of Medical Sciences (IR.UMSU.REC.1403.051). Informed consent to participate in the study was obtained from all participants. This study involved no experiments. It was performed in accordance with relevant guidelines and regulations. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Funding This study has no financial support. Author Contribution R.A. took part in the planning of the study and the formulation of questions in the interview guide. H.G. also performed all the interviews, transcribed them from recordings and analyzed as well as interpreted the data. R.A. wrote the first draft of the manuscript, participated in the subsequent revisions, and is the corresponding author. M.R. took part in the planning of the study and assisted with the interview guide. R.A. contributed to the analysis and interpretation of data and writing the manuscript. H.G. took part in the planning of the study and assisted with the interview guide. M.R. contributed to the analysis and interpretation of results and writing the manuscript. Acknowledgement This article is part of a PhD thesis that was conducted after obtaining ethical approval from Urmia University of Medical Sciences (IR.UMSU.REC.1403.051). The authors express their gratitude and appreciation to the participants who took part in this study. Data Availability The dataset cannot be made publicly available for ethical and legal reasons. Access to the data can be granted on reasonable request. Requests to access the data should be sent to: [email protected] . References Kovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Supplements. 2022;12(1):7–11. Hu S, Xiong R, Hu Q, Li Q. 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Sh M, Gh S. comparison study of depression between hemodialsis patients and renal transplant recipients. 2010. Axelrod DA, Schnitzler MA, Xiao H, Irish W, Tuttle-Newhall E, Chang S-H, et al. An economic assessment of contemporary kidney transplant practice. Am J Transplant. 2018;18(5):1168–76. Lentine KL, Patel A. Risks and outcomes of living donation. Adv Chronic Kidney Dis. 2012;19(4):220–8. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6309249","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":451451679,"identity":"cfba33c1-9957-4e7d-a42b-c47c0bfb0f51","order_by":0,"name":"Reza abdollahi","email":"","orcid":"","institution":"Urmia University of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Reza","middleName":"","lastName":"abdollahi","suffix":""},{"id":451451680,"identity":"6c9d33cd-1f2c-4827-a93d-43eadf72d482","order_by":1,"name":"haleh ghavami","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABCElEQVRIiWNgGAWjYBACAwbmBmYgnQDmJVSARKBAAqcWRmQtZ0jWwthGhBZz9oONjwsYavP4ZyQ/3fBw3mF5c/bmAww/KhgSZzZg12LZk9hsPIPheLHEjTSzG4nbDhvu7DmWwNhzhiFxNi6HHUhsk+ZhOJbYcOYAWAvjhhs5BsxAFybOw6Xl/MP23yAt888c/3Yjcc5he8JabiS2MfMw1CRuON4DtKXhcCJcC06H3XjYDHTYgcSNx3vKbiQcS0/ecOZYwsGeMxLGuLxvcD754GcehrrEeYfZt938UWNtu+F488EHPypsZGccwGENCDD+OwxjNoPJA7hjBQ7qMBijYBSMglEwCuAAAMfAaRn8nQFfAAAAAElFTkSuQmCC","orcid":"","institution":"Urmia University of Medical Sciences","correspondingAuthor":true,"prefix":"","firstName":"haleh","middleName":"","lastName":"ghavami","suffix":""},{"id":451451681,"identity":"eea18771-1d63-4458-91e4-98ba8d0821ca","order_by":2,"name":"Moloud Radfar","email":"","orcid":"","institution":"Urmia University of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Moloud","middleName":"","lastName":"Radfar","suffix":""}],"badges":[],"createdAt":"2025-03-26 06:38:19","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6309249/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6309249/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":101881146,"identity":"9d32dc74-be91-42c9-8249-66cd5f70304a","added_by":"auto","created_at":"2026-02-04 15:10:13","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":731301,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6309249/v1/c63351a2-f473-41a2-a201-ca849ad2e439.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Life on a Challenging Path: Understanding Patients' Experiences of Kidney Transplantation, a Qualitative Content Analysis Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eChronic kidney disease is considered one of the most important causes of mortality in the 21st century. Given the increase in risk factors such as obesity and diabetes, the number of patients with chronic kidney disease has also been rising, affecting approximately 843.6\u0026nbsp;million people worldwide in 2017 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). There are about 100,000 kidney transplant patients in the United States, and when adding kidney transplants from around the world, this number more than doubles (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). In Iran, similar to other countries, there has been progress in the field of kidney transplantation, with 3,736 kidney transplants performed in Iran between 2006 and 2014 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). The number of deaths following kidney transplantation varies depending on the specific study and time period. One study found that 168 out of 438 patients with successful transplants lost their lives, with the most common causes of death being heart disease, infection, and cancer (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Another study indicated that arterial occlusive disease was responsible for 12 percent of deaths among 325 kidney transplant recipients (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Additionally, urological complications after kidney transplantation were reported in a study involving 274 transplants, with a rate of 6.2% and no reported deaths (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). It is important to note that these studies are conducted in different populations and time periods, and the overall number of deaths following kidney transplantation worldwide may vary (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePatients face multiple challenges after kidney transplantation. According to Starzl, transplantation is more than just receiving a new organ; it is essential for recipients to change their perspective on the world and to adapt physically, psychologically, and socially to a serious new reality, as there is a deep gap between the reality and the expectations of patients and their families in the post-operative period (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Recipients and their families encounter a persistent and new problem. They must certainly adhere to a complex treatment regimen, which includes a medication regimen, lifestyle changes in terms of nutrition, exercise, and weight control. Additionally, they will also be treated with immunosuppressive medications (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). On the other hand, these patients face multiple stressors in every aspect of life, including family problems, changes in sexual function, dependence on others for daily living, social isolation, changes in body image, psychological pressures, and the threat of death. The individual's roles and health status are affected, and in the long term, there is a decline in quality of life and the emergence of physical and psychological problems (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFolkman and Lazarus have defined these factors as external needs, which the individual perceives as challenges and must learn to adapt to using internal or external coping strategies (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Larsen writes that transplant recipients, due to their experience with a chronic condition, are never completely cured and require long-term management of their illness and associated discomfort, treatments, and follow-ups (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAddressing the experiences of kidney transplant patients leads to a better understanding of the challenges these patients face in the realm of chronic diseases, and it will also enhance our ability to comprehend the nature of these problems, experiences, and their changes. Furthermore, given the increasing prevalence of kidney diseases and the subsequent rise in kidney transplant statistics, studying the experiences of kidney transplant patients and proposing potential solutions within the academic system seems essential. Since uncovering the hidden dimensions of these patients' experiences cannot be achieved through quantitative research and is more compatible with qualitative approaches, health organizations and policymakers in the field of kidney diseases can benefit from the results of this research in planning and decision-making. The aim of this study was to examine the experiences of patients regarding kidney transplantation.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign and sampling\u003c/h2\u003e \u003cp\u003eThis qualitative study utilized conventional content analysis. The participants in this research were kidney transplant patients selected from the kidney transplant department of Imam Khomeini Hospital in Urmia, as well as outpatient clinics for kidney transplant patients in the city of Urmia. Sampling was conducted purposefully and with maximum diversity, considering the age, gender, education level, ethnicity, and economic status of the participants. The inclusion criteria included patients over the age of eighteen, those with a history of kidney transplantation, and the ability to communicate verbally and share experiences.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eTo collect data, semi-structured in-depth interviews were conducted from Farvardin to Khordad 1403 by the researcher (R.A, a Ph.D. candidate in nursing) at a time and place preferred by the participants. The interviews were guided by several open-ended questions such as \"What is your experience with kidney transplantation?\" and \"What is life like after the kidney transplant?\" Additionally, probing questions were used to gather deeper data about the participants' experiences. Examples of these questions included: \"Can you elaborate on that?\" and \"What do you mean by that?\" At the end of each interview, participants were asked if they wanted to add anything else. Also, during the interview, all the non-verbal behaviors of the participants, including body movements, facial expressions, tone of voice, emotional reactions, and expressions of emotions, were recorded by the researcher in order to better explain the interviews. All interviews were conducted in a quiet and private room in the study environment.\u003c/p\u003e \u003cp\u003eThe time and duration of the interviews were adjusted according to the preferences and physical conditions of the participants. If the participants felt fatigued, the interviews would be interrupted. The duration of the interviews varied between 35 to 45 minutes, with an average of 40 minutes, depending on the different conditions of the patients. Data collection continued until saturation of information was reached. The interviews were recorded and managed using the MAQDA software.\u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eData analysis was conducted using the approach proposed by Graneheim and colleagues (2004) (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Data analysis was done by the main investigator (RA) under the supervision of the research team. Inductive content analysis is an inductive process that involves iterative coding. First, the main investigator (RA) transcribed the interviews word for word and codes used to label the data was created during the coding process based on the actual content of the data set. In this research, the codes were identified by the researcher within the data itself, or as it is often said, \u0026ldquo;emerged\u0026rdquo; and the codes are or \u0026ldquo;emerged\u0026rdquo; from the data. The coding process was not done just once for each transcript, but was refined and then repeated based on comparisons between transcripts. Each transcript was coded several times with more detailed repetitions. Since the coding was inductive and by analyzing more transcripts, new aspects of the data were identified, this recoding was repeated and new codes were identified. It is very common for ideas identified in later transcripts to be present in earlier transcripts, perhaps in more indirect ways, but not recognized when those transcripts were first coded. Therefore, the researcher added to the list of codes and adapted it during the analysis process. The coding process, following the comparison, grouping and division of groups of codes, led to categories and subcategories.\u003c/p\u003e \u003cp\u003eParticipants\u0026rsquo; quotes (initial codes) were grouped and summarized based on similarities, and dense codes were obtained. Then the dense codes were categorized based on the area and similarity and formed sub-categories. And sub-categories were formed based on the subject area of categories and then categories particle for themes. It is necessary to explain that the data obtained from the interviews of formal service providers were analyzed simultaneously with women of reproductive age. Finally, the dimensions and areas of the themes of mental health literacy in reproductive age women were determined.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eTrustworthiness\u003c/h3\u003e\n\u003cp\u003eAccording to the definition of Lincoln and Goba (1986), the well-known criteria for evaluating the validity and reliability of qualitative data include credibility, transferability, dependability and confirm ability were used (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In the present study, to ensure the credibility of the findings, the coded text in the interview was given to the participants to confirm the extracted codes (Member Check) and if there was a contradiction, the necessary investigation was done and clarification was done with the help of the participants\u0026rsquo; opinions. In addition, key informants including psychologists, psychiatrists and counselors were used in order to use their experiences. The interviews were analyzed by the research team. In this way, the problems in the interview process and the coding process were determined. The researcher tried to increase the credibility of the research by spending enough and long time to review the information and data, constantly rethinking the codes and classes and holding numerous meetings with the professors of the research team until reaching a consensus. Also, the integration of different methods of data collection, such as in-depth interviews, note-taking, daily notes, and the selection of participants with the maximum variety of other actions taken in this direction. In order to improve the dependability of the research, he used the precise introduction of the participants and the complete explanation of the data analysis steps to enable the audit of the research.\u003c/p\u003e \u003cp\u003eAlso, an attempt was made to guide the interview and coding process in line with the research question so that the research findings have a good logic and consistency. In order to improve the confirm ability, the researcher tried to provide a complete and step-by-step explanation of the different stages of the research, from data collection to the formation of sub-classes, classes and topics, so that the review of the research is possible for the readers. Also, the accuracy of the research process step by step, including the process of interviews, coding, extraction of classes and themes, was confirmed by the research team. Finally, in order to improve the transferability, it was tried to provide clear and complete explanations about the research field, experiences and events during the research so that other researchers are also able to judge the research process. Also, participants with maximum diversity in terms of age, level of education, occupation and marital status entered the research.\u003c/p\u003e\n\u003ch3\u003eEthical considerations\u003c/h3\u003e\n\u003cp\u003eParticipants received written information about the study before agreeing to participate. When meeting the interviewer, they were again given written and oral information about the aim and procedures of the study, that participation was voluntary and that they had the right to withdraw at any time and to choose not to answer a question. They were informed that the interviews would be recorded, and that the data would be kept confidential. Written and oral (recorded) informed consent was obtained from all participants. This study involved no experiments. It was performed in accordance with relevant guidelines and regulations.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThe participants in this study included nine male and nine female kidney transplant patients with an average age of 47.83 years, ranging from 40 to 58. Four were widowed, three were single, and the rest were married. Their education levels varied from illiterate to bachelor's degree. Table\u0026nbsp;1 shows the characteristics of the participants.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eOverall findings\u003c/h3\u003e\n\u003cp\u003eThe findings of the study showed that patients expressed their experiences of kidney transplantation in significantly different ways. Their understanding of kidney transplantation led to the formation of a main category characterized by a critical mix of fear and hope, along with four intermediate categories that included concerns about the future, emotional and spiritual support from those around them, stress-inducing thoughts, and financial problems. These four categories consist of twelve subcategories, which are illustrated in Table\u0026nbsp;3.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e1- Concerns about the future\u003c/h2\u003e \u003cdiv id=\"Sec12\" class=\"Section3\"\u003e \u003ch2\u003e1\u0026ndash;1: Probability of Rejection\u003c/h2\u003e \u003cp\u003eMost participants in the present study expressed that one of their major concerns was the fear of transplant rejection. This concern was considered one of the most important reasons for patients' reluctance to undergo transplantation before the process began. According to the participants, this fear affected their quality of life and sometimes led to feelings of hopelessness about the future.\u003c/p\u003e \u003cp\u003eOne of the patients said:\"One thing that constantly occupies my mind is the fear that my kidney transplant might be rejected. This thought has impacted all aspects of my life and has made it difficult for me to focus on my daily tasks.\" (Participant number 3).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e1\u0026ndash;2: Physical and Physiological Complications of Transplantation\u003c/h2\u003e \u003cp\u003eMany participants in the study considered the emergence of physical and physiological complications after transplantation, including severe pain and discomfort or infection at the surgical site, as unpleasant experiences following kidney transplantation. Other physical complications included those related to the use of immunosuppressive and corticosteroid medications, which led to outcomes such as early fatigue and reduced physical tolerance for patients. One patient said:\u003c/p\u003e \u003cp\u003e\"... I can't even walk a hundred meters; I quickly feel lightheaded and have to sit down. I also had severe pain in my legs and back.\" Participant number 5.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e1\u0026ndash;3: Job-Social Limitations\u003c/h2\u003e \u003cp\u003eParticipants in the present study reported experiencing job-related problems and difficulties in fulfilling their job responsibilities after undergoing kidney transplantation. This issue, in addition to economic challenges, can lead to increased isolation for patients. Participants expressed a fear of rejection after the transplant, considering it one of the most difficult and exhausting crises of their lives. One patient said:\u003c/p\u003e \u003cp\u003e\"When you undergo the transplant, it's like being imprisoned; you have to stay at home for a year, and this is unbearable for me. My job involves daily interactions with many people, and I have gotten used to that. Staying at home is really hard for a person.\" (Participant number 8).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003e2- Emotional and Spiritual Support from Surroundings\u003c/h2\u003e \u003cdiv id=\"Sec16\" class=\"Section3\"\u003e \u003ch2\u003e2\u0026thinsp;\u0026minus;\u0026thinsp;1: Increased Communication with Friends and Family After Transplan\u003c/h2\u003e \u003cp\u003eIn the present study, the inclination towards family and friends was particularly evident in patients who had experienced dialysis before their transplant and had fewer interactions with others. One of the patients said:\u003c/p\u003e \u003cp\u003e\"When I was on dialysis, I had a fistula in my arm, and it was a different situation. It was hard to, for example, have relationships or go see your friends, but after the transplant, your spirit gets a little better. I've gained a few kilos and I feel better. I have a better relationship with my friends now; I go to parties. I felt better after the transplant. Before the transplant, it was tough, and I didn't go out much.\" (Participant number 5).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003e2\u0026ndash;2: Material and Spiritual Support from Friends\u003c/h2\u003e \u003cp\u003eSome participants in the study stated that they have friends who have supported them in many areas, especially financially and emotionally. According to these patients, the presence of individuals who play a supportive and hopeful role in their lives is one of the most positive and pleasant experiences they have encountered during their treatment and care process. One patient said:\u003c/p\u003e \u003cp\u003e\"I have a few friends who are always by my side, no matter the circumstances. There have been times when I couldn't reach my family, but these friends have gone above and beyond for me, even covering the costs of my medications and doctor visits. They value me a lot because of my illness; their presence is a great source of strength for me.\" (Participant number 10).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e2\u0026ndash;3: Motivation for Expanding Relationships\u003c/h2\u003e \u003cp\u003eSome participants in the study stated that they had a greater desire to connect with others compared to before their transplant. For various reasons, they expressed increased motivation and interest in interacting with those around them, describing it as one of their positive experiences.\u003c/p\u003e \u003cp\u003e\"I want to expand my relationships. Dialysis takes up a lot of time. Two days a week, three days a week, depending on the doctor's orders, all your time is consumed by it. On the day you go for dialysis, you spend the whole day there, and even on the day you don\u0026rsquo;t go, you have to think about what you need to do tomorrow when you won\u0026rsquo;t be going to dialysis. When a person has a transplant, they take a lot of care, but thank God, it seems like they have a bit more free time. They have more opportunities to go out with friends. I\u0026rsquo;ve developed a greater interest in my friends; back then, I really didn\u0026rsquo;t have the patience for anyone.\" (Participant number 13).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003e3- Stressful Thoughts\u003c/h2\u003e \u003cdiv id=\"Sec20\" class=\"Section3\"\u003e \u003ch2\u003e3\u0026thinsp;\u0026minus;\u0026thinsp;1: Feelings of Depression\u003c/h2\u003e \u003cp\u003eSome participants in the study reported that they experienced depression after the transplant procedure. According to these patients, depression can arise for various reasons, such as hopelessness about the future, forced isolation due to the recovery period, and distance from social interactions, as well as work and financial issues following disabilities and limitations after the transplant. One of the patients said:\u003c/p\u003e \u003cp\u003e(( after a while in solitude and isolation due to the recovery period, experiences a kind of depression. I don't know, maybe it's the effect of the medications I'm taking. I've become a different person; I no longer enjoy being around others. I used to really want to join the local football team, but I've been so lonely that now I prefer solitude. I feel like connecting with others has become very difficult for me.)) (Participant number 4).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003e3\u0026thinsp;\u0026minus;\u0026thinsp;2: Worries About Test Results\u003c/h2\u003e \u003cp\u003eMost participants in the study experienced stress regarding the results of periodic tests. These patients undergo periodic tests from once a week to once every two months a year since their transplant, and the follow-up on test results and the stress of whether the results are normal or abnormal was undesirable for the participants. One of the patients said:\u003c/p\u003e \u003cp\u003e\"While waiting for the test results, one tends to feel a bit stressed about what the results will show. Initially, the tests were done once a week, then every two weeks, then once a month, and now it's every two months. We go for tests every two months to determine how well the kidneys are functioning and whether the prescribed medications need to be increased or decreased.\" (Participant number 5).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003e3\u0026ndash;3: Concerns about Nutritional Care\u003c/h2\u003e \u003cp\u003eAdhering to a specific diet and nutritional regimen is of great importance for kidney transplant patients and is closely related to the outcomes of the transplant. Diets that contain protein and minerals at the prescribed levels are recommended for these patients. Most participants in the current study expressed concerns and obsessions regarding the consequences of not adhering to this therapeutic diet. One of the patients said:\u003c/p\u003e \u003cp\u003e((..... When you have a transplant, there are many nutritional guidelines you need to follow. Not everything should be told by the doctor. For example, I don't consume carbonated drinks even once a year, and since I can remember, I haven't eaten fried foods or foods high in salt after the transplant. I've completely eliminated fatty foods as well. These are things that need to be adhered to.)) (Participant number 10).\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003e4- Financial Problems\u003c/h2\u003e \u003cdiv id=\"Sec24\" class=\"Section4\"\u003e \u003ch2\u003e4\u0026thinsp;\u0026minus;\u0026thinsp;1: High Costs of Medications and Transplant\u003c/h2\u003e \u003cp\u003eMost participants in the current study expressed dissatisfaction with the high costs of medication and the transplant procedure, citing it as one of the biggest problems and limitations in their treatment process. Most follow-up treatments and prescribed medications after a kidney transplant impose significant financial burdens on patients and their families. One of the patients said:\u003c/p\u003e \u003cp\u003e\"These transplant costs and, worse, the subsequent medications are so high that we are crushed under the weight of all these expenses. We have no financial strength left; we spent everything we had and didn't have on this illness. It seems that the insurance companies and the government don't care about the patients at all.\" (Participant number 7).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003e4\u0026thinsp;\u0026minus;\u0026thinsp;2: Loss of Job Due to Disability and Limitations\u003c/h2\u003e \u003cp\u003eSome participants in the study mentioned issues and problems related to their job status after the transplant surgery, stating that after the transplant, they faced challenges such as job changes, lack of career advancement, and job loss. According to the participants, kidney transplant patients often encounter significant physical and mobility limitations after the transplant, which can lead to job loss or instability. One patient said:\u003c/p\u003e \u003cp\u003e\"All it takes is for them to find out that you had a kidney transplant, and they will fire you on the spot. No one will hire you either; they say you are incomplete and not useful. You are forced to settle for light jobs with low income.\" (Participant number 7).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003e4\u0026thinsp;\u0026minus;\u0026thinsp;3: Costs of Visits and Periodic Tests\u003c/h2\u003e \u003cp\u003eMany participants complained about the very high costs of periodic examinations and tests. The cost of transportation, especially for patients coming from surrounding cities to the provincial center, was also a concern. According to the participants, financial support from government organizations and insurance companies for kidney transplants has been limited, which has exacerbated the poor economic conditions of the participants.\u003c/p\u003e \u003cp\u003eOne patient said: \"My problems are not just one or two. Right now, I had to beg and plead with one of my friends to borrow money to come for a doctor's visit. I have no income; I'm just getting by with day labor. The government and insurance companies have left people to fend for themselves.\" (Participant number 11).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present research was conducted with the aim of elucidating the experiences of patients undergoing kidney transplantation. Based on the analysis of the data, the initial codes were categorized into four main themes: anxiety about the future, emotional and spiritual support from others, stress-inducing thoughts, and financial problems.\u003c/p\u003e \u003cp\u003eOne of the findings of this study was the fear of kidney transplantation and the possibility of transplant rejection. The study by Pournikoo and colleagues indicated that the unpredictability and potential for rejection of the transplant were significant reasons for the reluctance of patients with chronic kidney failure to undergo kidney transplantation before the procedure, which aligns with the results of the present study (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). It seems that one of the main factors contributing to the fear in kidney transplant patients is a lack of awareness regarding self-care and adherence to health guidelines. To address this issue, establishing effective communication with patients and providing them with proper education can enhance health literacy among these patients, resulting in a reduction of their fear regarding the possibility of transplant rejection.\u003c/p\u003e \u003cp\u003ePhysical and physiological complications following kidney transplantation were among the issues reported by participants. The study by Rosenthal and colleagues indicated that one of the main complaints of patients after kidney transplantation is the side effects of treatment with immunosuppressants, which aligns with the results of the present study (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Additionally, the study by Kalantarzadeh and colleagues showed that physical problems associated with transplantation, including fatigue, severe weakness, and numbness in various parts of the body, are also physical issues related to transplantation, consistent with the findings of the current study (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). To manage physical complications after kidney transplantation, a multifaceted approach combining preventive strategies, prompt intervention, and long-term management is essential. Key complications include urological issues, infections, surgical complications, and drug side effects, each requiring specific management protocols. By implementing measures such as infection prevention and lifestyle modifications, it is possible to significantly mitigate physical complications following kidney transplantation.\u003c/p\u003e \u003cp\u003eAnother finding of this study was the job-related and social limitations faced by patients after kidney transplantation. The study by Bayabani and colleagues showed that patients after transplantation struggle to maintain their jobs or obtain new job positions, which aligns with the results of the present study (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). It seems that transplant patients, due to the physical and bodily limitations they experience post-transplant, often face significant challenges in their work affairs. This situation has led to a kind of stigma regarding their disability, causing employers to be reluctant to assign sensitive responsibilities to these individuals. By implementing measures such as providing unemployment insurance for these individuals, allowing remote work, and offering flexible working conditions, this issue can be somewhat alleviated.\u003c/p\u003e \u003cp\u003eOne of the other findings of the present study is the greater tendency of kidney transplant recipients to connect with friends and family after the transplant. The study by Saidi and colleagues showed that patients spent more time with their family and friends after the kidney transplant and felt more satisfied with their lives, which aligns with the results of the current study (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). This can be explained by the fact that these patients spent a lot of time before the transplant dealing with treatment and managing side effects, leaving them with less time to dedicate to family and friends. On the other hand, considering the specific conditions of these patients after the transplant and the necessity of caring for them, their dependence on family and friends significantly increases.\u003c/p\u003e \u003cp\u003eOne of the other important findings of this study is the feeling of depression in patients after kidney transplantation. The study by Mahmoudi and colleagues showed that patients experience severe feelings of depression and are under high psychological stress after kidney transplantation, which aligns with the results of the present study (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). To explain this phenomenon, it can be said that kidney transplant patients spend a long time in recovery, away from social interactions and activities. Additionally, due to financial constraints and other factors such as the need to monitor test results, adhere to dietary and medication regimens, and the costs associated with transplantation, they experience high levels of anxiety, which can subsequently lead to depression in these patients. By implementing evidence-based interventions, depression in these patients can be largely managed. Approaches such as psychological support, pharmacological treatments, and lifestyle modifications with an emphasis on personal care can be effective.\u003c/p\u003e \u003cp\u003eOne of the other findings of this study was that financial problems resulting from illness and the exorbitant costs of kidney transplantation were significant factors that led to an unpleasant experience for patients regarding kidney transplants. The study by Akhlaghi and colleagues showed that economic status is an important factor in the follow-up treatment of kidney transplant patients, which aligns with the results of the present study (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). On the other hand, financial issues can discourage patients from pursuing treatment and necessary tests. The costs of obtaining transplant medications, the expenses of the transplant itself, and post-transplant care are very high. Additionally, the long-term treatment of kidney failure, dialysis, and the employment issues it creates for patients result in most patients not having a suitable economic situation and being unable to afford the costs of transplantation and subsequent care (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). By implementing measures such as developing insurance services for the costs of follow-up tests for these patients and their periodic visits, as well as considering subsidized medication quotas, significant steps can be taken to alleviate the financial problems faced by these patients.\u003c/p\u003e "},{"header":"Limitations","content":"\u003cp\u003eThe mental nature of data collection and the small sample size limit the generalizability of the study's results; however, selecting samples from individuals of different ethnicities and with varying educational, social, and economic backgrounds has made the results of this study largely applicable to similar units.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe present research showed that the experiences of patients after kidney transplantation include psychological concerns and distressing emotions, emotional and spiritual support from family, stress-inducing thoughts, and financial problems. Attention from health and treatment managers and policymakers to these issues and concerns, along with efforts to address and mitigate them, can help facilitate a quicker recovery for patients and their reintegration into life and society. It is suggested that future research should focus on the experiences and challenges faced by families, especially the primary caregivers of kidney transplant patients who have the most interaction with these patients.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eConflict of Interest\u003c/h2\u003e \u003cp\u003eThe authors declare that there is no conflict of interest regarding the present research.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e \u003cp\u003e This article is part of a PhD thesis that was conducted after obtaining ethical approval from Urmia University of Medical Sciences (IR.UMSU.REC.1403.051). Informed consent to participate in the study was obtained from all participants. This study involved no experiments. It was performed in accordance with relevant guidelines and regulations.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConsent for publication\u003c/strong\u003e \u003cp\u003eNot applicable.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eCompeting interests\u003c/strong\u003e \u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis study has no financial support.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eR.A. took part in the planning of the study and the formulation of questions in the interview guide. H.G. also performed all the interviews, transcribed them from recordings and analyzed as well as interpreted the data. R.A. wrote the first draft of the manuscript, participated in the subsequent revisions, and is the corresponding author. M.R. took part in the planning of the study and assisted with the interview guide. R.A. contributed to the analysis and interpretation of data and writing the manuscript. H.G. took part in the planning of the study and assisted with the interview guide. M.R. contributed to the analysis and interpretation of results and writing the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThis article is part of a PhD thesis that was conducted after obtaining ethical approval from Urmia University of Medical Sciences (IR.UMSU.REC.1403.051). The authors express their gratitude and appreciation to the participants who took part in this study.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe dataset cannot be made publicly available for ethical and legal reasons. Access to the data can be granted on reasonable request. Requests to access the data should be sent to: [email protected].\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eKovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Supplements. 2022;12(1):7\u0026ndash;11.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHu S, Xiong R, Hu Q, Li Q. Effects of nursing intervention based on health belief model on self-perceived burden, drug compliance, and quality of life of renal transplant recipients. Contrast Media \u0026amp; Molecular Imaging. 2022;2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMalekshahi A, MortezaNejad HF, Taromsari MR, Gheshlagh RG, Delpasand K. An evaluation of the current status of kidney transplant in terms of the type of receipt among Iranian patients. Ren Replace Therapy. 2020;6(1):1\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMurakami N, Webber AB, Nair V. Transplant onconephrology in patients with kidney transplants. Adv Chronic Kidney Dis. 2022;29(2):188\u0026ndash;200. e1.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHoward RJ, Reed AI, Van der Werf WJ, Hemming AW, Patton PR, Scornik JC. What happens to renal transplant recipients who lose their grafts? Am J Kidney Dis. 2001;38(1):31\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eIbels L, Stewart J, Mahony J, Sheil A. Deaths from occlusive arterial disease in renal allograft recipients. Br Med J. 1974;3(5930):552\u0026ndash;4.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYing T, Shi B, Kelly PJ, Pilmore H, Clayton PA, Chadban SJ. Death after kidney transplantation: an analysis by era and time post-transplant. J Am Soc Nephrology: JASN. 2020;31(12):2887.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStarzl TE, Iwatsuki S, Van Thiel DH, Gartner JC, Zitelli BJ, Malatack JJ, et al. Evolution of liver transplantation. Hepatology (Baltimore MD). 1982;2(5):614.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFidan C, Ağırbaş İ. The effect of renal replacement therapy on health-related quality of life in end-stage renal disease: a meta-analysis. Clin Exp Nephrol. 2023:1\u0026ndash;18.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDobronravov VA, Vasilieva IA. Health-related quality of life and long-term mortality in young and middle-aged hemodialysis patients. Int Urol Nephrol. 2021;53(11):2377\u0026ndash;84.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLazarus RS, Folkman S. Stress, appraisal, and coping. Springer publishing company; 1984.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLarsen PD. Illness behavior. Chronic illness: Impact and intervention. 2009;7:25\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGraneheim UH, Lindgren B-M, Lundman B. Methodological challenges in qualitative content analysis: A discussion paper. Nurse education today. 2017;56:29\u0026ndash;34.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLincoln Y. Naturalistic inquiry: Sage; 1985.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNizič-Kos T, Ponikvar A, Buturović‐Ponikvar J. Reasons for refusing kidney transplantation among chronic dialysis patients. Therapeutic Apheresis Dialysis. 2013;17(4):419\u0026ndash;24.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosenthal MM, Molzahn AE, Chan CT, Cockfield SL, Kim SJ, Pauly RP. Why take the chance? A qualitative grounded theory study of nocturnal haemodialysis recipients who decline kidney transplantation. BMJ open. 2016;6(5):e011951.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKalantar-Zadeh K, Tortorici AR, Chen JL, Kamgar M, Lau WL, Moradi H, et al. editors. Dietary restrictions in dialysis patients: is there anything left to eat? Seminars in dialysis. Wiley Online Library; 2015.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBiabani F, Mahmudirad G, Hassankhani H, Rahmani A. The Reasons for Refusing Kidney Transplantation Among Iranian Patients Undergoing Peritoneal Dialysis. Qom Univ Med Sci J. 2022;16(5):378\u0026ndash;89.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSaidi RF, Broumand B. Current challenges of kidney transplantation in Iran: moving beyond the Iranian Model. Transplantation. 2018;102(8):1195\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSh M, Gh S. \u0026lt; A\u0026thinsp;\u0026gt;\u0026thinsp;comparison study of depression between hemodialsis patients and renal transplant recipients. 2010.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAxelrod DA, Schnitzler MA, Xiao H, Irish W, Tuttle-Newhall E, Chang S-H, et al. An economic assessment of contemporary kidney transplant practice. Am J Transplant. 2018;18(5):1168\u0026ndash;76.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLentine KL, Patel A. Risks and outcomes of living donation. Adv Chronic Kidney Dis. 2012;19(4):220\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"experience, patient, kidney transplant, content analysis","lastPublishedDoi":"10.21203/rs.3.rs-6309249/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6309249/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eObjective\u003c/strong\u003e: Kidney transplantation is one of the alternative treatments for chronic kidney failure. Various cultural, social, and individual factors can influence patients' experiences of kidney transplantation, which may not be adequately examined through quantitative studies. Therefore, this study was conducted using qualitative content analysis to gain a deeper understanding of the subject.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: This qualitative study was conducted using a conventional content analysis approach. Purposeful sampling was initiated and continued until data saturation was reached. The primary method of data collection was semi-structured interviews. A total of 18 participants were interviewed. The interviews were analyzed using the method proposed by Graneheim and Lundman (2004). Ethical considerations were applied at all stages of the study. MAXQDA version 10 software was used for data management.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: The average age of participants in the study was 47.83 years. From the data analysis, four main categories emerged: 1- Concerns about the future (risk of transplant rejection, physical and bodily complications of the transplant, occupational and social limitations), 2- Emotional and spiritual support from others (increased communication with friends and family after the transplant, material and spiritual support from friends, motivation to expand relationships), 3- Stressful thoughts (feelings of depression, worries about test results, concerns about nutritional care), and 4- Financial problems (high costs of medication and transplant, job loss due to disability and limitations, costs of consultations and periodic tests).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e: Kidney transplant patients face various experiences and issues in both personal and social dimensions after the transplant. Based on the understanding of these experiences, health managers and policymakers can implement interventions to enhance the quality of life and address the problems faced by kidney transplant patients.\u003c/p\u003e","manuscriptTitle":"Life on a Challenging Path: Understanding Patients' Experiences of Kidney Transplantation, a Qualitative Content Analysis Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-05-05 07:01:34","doi":"10.21203/rs.3.rs-6309249/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"ba05ce04-b52c-4b3f-83e0-8c943de80600","owner":[],"postedDate":"May 5th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-02-03T18:10:14+00:00","versionOfRecord":[],"versionCreatedAt":"2025-05-05 07:01:34","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6309249","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6309249","identity":"rs-6309249","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}