Immunosuppressive Medication Adherence Among Kidney Transplant Recipients: A Qualitative Exploration of Patient Experiences
Objectives: Kidney transplant is a life-saving treatment for patients with end-stage renal failure. However, lifelong adherence to immunosuppressive medication is essential to prevent graft rejection. Despite its importance, nonadherence remains a common issue among transplant recipients, particularly in varying cultural and regional contexts. This study, which used a qualitative descriptive design, aimed to explore the factors affecting adherence to immunosuppressive medication among kidney transplant recipients in the Mediterranean region of Türkiye through a qualitative approach.
Materials and Methods: This study included 21 kidney transplant recipients through snowball sampling who were using immunosuppressive drugs. Data were collected through semi-structured in-depth interviews. The interviews were analyzed using thematic content analysis to identify key categories, themes, and sub-themes related to medication adherence behavior.
Results: Four main categories emerged from the data: individual factors, social support, health system-related factors, and psychological aspects. Themes included knowledge and awareness about medications, emotional responses to drug use, quality of communication with health care providers, and the presence or absence of social support. Subthemes such as fear of organ loss, forgetfulness, family encouragement, and depressive symptoms were also identified. Participant narratives reflected how personal beliefs, emotional burden, and systemic support played a crucial role in adherence behavior.
Conclusions: This study highlighted the multifaceted nature of medication adherence in kidney transplant recipients. Findings underscored the need for individualized education, psychosocial support, and stronger patient-provider communication to enhance long-term adherence. Incorporating culturally sensitive strategies within follow-up care may contribute to more successful transplant outcomes.
Key words : Graft survival, Immunosuppressive medication, Patient experience, Qualitative study, Renal transplantation
Introduction
Organ transplant is an effective therapeutic option for patients with irreversible organ failure, offering them a renewed opportunity for survival and improved quality of life.1 Kidney transplant is universally acknowledged as the gold standard for the treatment of end-stage renal disease, offering patients greatly improved survival rates and a vastly superior quality of life compared with long-term dialysis therapy.2-5 Globally, the kidney remains the most frequently transplanted solid organ, representing approximately 65% of all transplant procedures.6 Although surgical techniques and early posttransplant care have advanced remarkably, the long-term viability of the allograft remains a significant clinical challenge.7-9 The transition from dialysis dependence to a functioning graft is often described by patients as a “gift of life,” yet this new state requires a lifelong commitment to a complex and rigorous medical regimen.4,10 The long-term success of kidney transplant is inextricably linked to strict, lifelong adherence to immunosuppressive medication, which is essential to suppress the host’s immune response and prevent the body from recognizing the donated organ as a foreign object.8,11 The clinical consequences of medication nonadherence (MNA) in the kidney transplant population are severe and well-documented. Nonadherence is identified as a primary risk factor for antibody-mediated rejection and late allograft loss, with reports indicating that MNA is responsible for approximately 20% of all antibody-mediated rejections and 16% of early graft failures.12-14 Research suggests that nonadherent recipients face a 7-fold higher risk of graft failure compared with those who are adherent.12,15 Furthermore, even minor deviations or “subclinical” nonadherence, such as inconsistent timing of doses, can increase the risk of late acute rejection and the development of donor-specific antibodies.7,8,16 Beyond graft loss, MNA is associated with increased hospitalization rates, higher health care costs estimated at $33 000 per patient in the first 3 years posttransplant and increased mortality from cardiovascular diseases and infections.13,17,18 Medication adherence is a dynamic, multifactorial phenomenon shaped by a complex interplay of individual, psychological, social, and health system-related factors.18,19 According to the World Health Organization model, adherence is influenced by 5 distinct domains: socioeconomic factors, patient-related factors, condition-related demands, therapy-related complexity, and health care system factors.18,20 At the individual level, patient knowledge, health literacy, and health perception significantly influence adherence behaviors.6,21 Cognitive functioning also plays a critical role, as the ability to organize daily routines and recall instructions is essential for managing the polypharmacy typically required after transplant.15,22 Psychological factors are among the most potent predictors of MNA. Symptoms of depression and anxiety are prevalent among kidney transplant recipients and are strongly associated with poor treatment implementation.6,15,23 The emotional burden of transplant includes a pervasive “fear of graft loss,” which serves as both a powerful motivator for adherence and a significant source of psychological distress.15,23,24 Furthermore, unintentional factors, such as forgetfulness and disruptions in daily routines, are frequently reported by patients as the most common reasons for missing doses.22,25,26 Social support, particularly from family members and partners, acts as a critical “buffer” that facilitates adherence by providing emotional encouragement and shared accountability.20,26,27 Conversely, systemic factors such as the quality of patient-provider communication, the complexity of the medication regimen, and the financial burden of high out-of-pocket costs (especially in regions with limited medical insurance coverage) can create significant barriers to long-term compliance.13,26,28 Despite the vast amount of literature on the prevalence and quantitative risk factors of MNA, a notable deficiency exists in qualitative research exploring the lived experiences and subjective perceptions of kidney transplant recipients.4,26 Most existing studies have relied on compliance statistics and standardized scales, which fail to capture the nuanced “patient-centered” perspective or the psychological reformulation required to live in a “changed world” after transplantation.4,29 Although quantitative data have revealed how many patients are nonadherent, qualitative evidence is required to understand the “how” and “why” behind these behaviors, including how recipients navigate side effects and integrate medications into their personal identities.26 Furthermore, adherence behaviors are deeply embedded in cultural and regional contexts. In Mediterranean and Middle Eastern settings, factors such as strong family-centered social structures, religious beliefs (eg, trust in divine providence), and unique health system organizations, play a distinctive role in shaping patient experiences.6,18,30 In Türkiye, which has one of the highest transplant rates in the region, qualitative exploration is scarce on how kidney transplant recipients perceive the burden of immunosuppressive therapy.6,25 Understanding these contextual factors is essential for developing culturally sensitive interventions that go beyond a “one size fits all” approach.10,30 A qualitative descriptive design is uniquely suited for this study, as it allows for a comprehensive and deep exploration of human experiences in their natural context.4,31 This approach facilitates the identification of the essential structure of meaning that patients assign to their medication-taking routines and the strategies they develop to maintain stability in their lives.4,32 By listening to the patients’ own voices, researchers can uncover barriers and facilitators that may remain invisible in quantitative surveys.28 This study aimed to explore factors affecting adherence to immunosuppressive medication among kidney transplant recipients in the Mediterranean region of Türkiye through a qualitative approach, thereby identifying the specific needs and experiences that influence long-term graft survival in this population.
Materials and Methods
Study design
This study used a qualitative descriptive design to provide a comprehensive and straightforward summary of patients’ experiences in their own terms. This design was selected because it is uniquely suited for exploring complex human experiences and identifying the meanings individuals assign to their health behaviors without the need for high-level conceptual or theoretical interpretation. The study followed the Consolidated Criteria for Reporting Qualitative Research guidelines to ensure comprehensive and transparent reporting.
Setting and participants
The target population consisted of adult kidney transplant recipients in Türkiye who were actively using immunosuppressive medication regimens. Participants were recruited using a snowball sampling technique, wherein initial participants identified through clinical contacts referred other potential candidates who met the study criteria. To be included, recipients had to be aged 18 years or older and have a functioning graft for a period sufficient for the stabilization of medication routines. The final sample size was determined by data saturation, which was reached at 21 participants when the addition of new interviews no longer yielded novel categories or themes.
Data collection
Data were collected through semi-structured, in-depth interviews conducted between March 2025 and May 2025. An interview guide was developed by the author based on a review of existing literature and clinical expertise in transplant care to ensure all relevant domains of adherence were addressed. The guide included open-ended questions regarding patients’ daily medication routines, perceived barriers, and the emotional impact of lifelong therapy. All interviews were conducted by the author via phone to ensure participant comfort and confidentiality. Each interview lasted approximately 45 to 60 minutes and was audio-recorded with the participant’s permission to ensure clear and accurate transcription.
Data analyses
The interviews were analyzed using thematic content analysis to systematically identify and categorize patterns within the narratives. The analytic process involved the following key steps: (1) verbatim transcription of audio recordings, (2) immersion in the data through repeated reading of transcripts, (3) initial coding, where meaningful units were extracted and labeled, (4) categorization, where codes were grouped based on similarities, and (5) theme development, where higher-order themes and subthemes were defined to describe the multifaceted nature of adherence. Software was used to assist in the systematic organization and management of the coded data.
Rigor and trustworthiness
To ensure the rigor of the findings, the criteria of credibility, dependability, confirmability, and transferability were applied. Credibility was established through prolonged engagement with the data and repeated review of the coding and thematic structure by the author to reduce potential bias. Dependability was ensured by maintaining a detailed audit trail of all methodological decisions and analytic steps. Confirmability was achieved by cross-checking interpretations against original participant quotes to ensure the findings accurately reflected the recipients’ voices. Transferability was addressed by providing a description of the participants’ contexts and experiences, allowing readers to assess the applicability of the findings to other settings.
Ethical considerations
The study received ethics committee approval from Burdur Mehmet Akif Ersoy University in accordance with the principles of the Declaration of Helsinki (No. GO 2025/1095, 05.02.2025). All participants provided written informed consent after receiving a thorough explanation of the study’s aim and their right to withdraw at any time without penalty. To protect participant confidentiality and anonymity, all identifying information was removed from the transcripts, and numerical codes were assigned to each respondent. All data were stored securely and were accessible only to the author.
Results
Thematic content analysis of the semi-structured interviews with 21 kidney transplant recipients in the Mediterranean region of Türkiye resulted in the identification of 4 main categories: individual factors, psychological aspects, social support, and health system-related factors (Table 1). These categories encompassed specific themes and subthemes that described the multifaceted nature of medication adherence behaviors among the participants (Table 2).
Individual factors
Knowledge and awareness of medications. Participants indicated that their level of understanding regarding the names, dosages, and specific functions of their immunosuppressive medications influenced their adherence. Many recipients perceived medication as an essential prerequisite for survival and expressed that having clear information about the “why” behind the treatment helped them maintain a disciplined routine. However, several participants noted that, while they understood the importance, they often lacked technical knowledge about drug interactions or long-term side effects. The doctors mentioned the importance of the drugs that I can’t afford to stop not even for one day. (Patient 13, female, 35 years). In the beginning, well, we don’t always understand everything that’s said. But here [through the education], it was very clear. (Patient 5, male, 42 years). Forgetfulness. Unintentional MNA was most frequently attributed to forgetfulness, often triggered by disruptions in the patient’s established daily routine. Participants reported that being away from home, traveling, or being preoccupied with work responsibilities led to missed or delayed doses. When I forget, it’s because the routine is broken and I didn’t think of it. (Patient 8, male, 50 years). I sometimes miss them but not deliberately; yes, sometimes I just forget. I miss more in the evenings when I fall asleep. (Patient 12, male, 46 years).
Psychological aspects
Emotional responses to immunosuppressive drug use. The requirement for lifelong medication use elicited varied emotional responses, ranging from gratitude for the “gift of life” to a sense of being “intoxicated” or over-medicalized. Personal beliefs about health and the significance of the transplant influenced whether the medication was viewed as a burden or a tool for freedom. Before the transplant, I had dialysis to sustain life, but now I take immunosuppressive drugs to survive. (Patient 4, female, 38 years). I feel intoxicated with all these drugs. (Patient 7, male, 27 years). Fear of graft loss. A pervasive “fear of rejection” or “fear of graft loss” was identified as a primary motivator for strict adherence. Participants described themselves as being hypersensitive to any physiological changes, viewing medications as their “daily partner” in the fight to prevent returning to dialysis. I’m always worried that there might be any problems, and I seem to have become sensitive to the kidney. (Patient 10, female, 45 years). If I forget to take my medicine, I look through the trash to find the medicine bag. (Patient 5, male, 36 years). Depressive symptoms. Symptoms of depression, including apathy, anxiety, and a loss of motivation, were reported as important barriers that occasionally led to intentional MNA. Participants experiencing lower mental health-related quality of life expressed more difficulty in maintaining the discipline required for their treatment. I often feel gloomy and depressed ... it makes it hard to care about the schedule. (Patient 15, male, 52 years).
Social support
Availability of social support and family encouragement. The presence of a supportive social network, particularly family members, acted as a critical facilitator for adherence. Family encouragement provided a shared sense of accountability, with spouses often taking responsibility for reminding the patient or organizing the medications. My wife makes sure I take them ... she helps. She gets all medicines ready. (Patient 9, male, 43 years). Half of them were reminded by their family members, especially their wives. (Patient 18, male, 36 years).
Health system–related factors
Quality of communication with health care providers. The nature of the interaction between the recipient and their medical team (nephrologists and nurses) greatly influenced adherence. Participants who felt their concerns were acknowledged and who received clear clinical counseling were more likely to follow treatment recommendations. Conversely, confusing or conflicting information from different providers served as a barrier. Doctor guided me on how to maintain the new kidney ... they told me that I can’t afford to stop it not even for one day. (Patient 2, male, 44 years). I get confused about how to take my immunosuppressant medication [when information changes]. (Patient 20, male, 53 years). Systemic support. Barriers within the health system, such as high medication costs, difficulty in accessing a pharmacy, or the complexity of the medical center’s organization, were highlighted by participants who struggled with adherence. I missed for one week because of money. (Patient 11, female, 46 years). It is expensive ... financially draining ... concerned about where to get the money. (Patient 21, female, 37 years).
Discussion
Qualitative exploration revealed that immunosuppressive medication adherence among kidney transplant recipients is a dynamic and multifaceted phenomenon, shaped by the interplay of individual knowledge, psychological resilience, social support systems, and the quality of interactions within the health care system. The results emphasized that recipients do not merely “take pills” but rather undergo a profound process of “reformulating to the condition” and “resetting their framework for living” to accommodate the demands of lifelong therapy.4 This discussion interprets these findings in the context of the existing literature, with particular attention to the cultural and regional specificities of Türkiye.
Individual factors and the burden of forgetfulness
Consistent with prior research, findings of this study identified forgetfulness as the primary cause of unintentional MNA.22,25,26 This unintentional behavior was often exacerbated by disruptions in daily routines, such as travel, work commitments, or social engagements.19,26 Although quantitative studies have often categorized forgetfulness as a simple behavioral failure, qualitative data here suggested that forgetfulness was deeply tied to the “routinization” process; recipients who successfully integrate medication into established habits, such as meal times or morning rituals, have reported higher perceived stability.10,29 The role of patient knowledge and health literacy also emerged as a critical baseline for adherence. Similar to the findings of Ganjali and colleagues, recipients in our study who lacked a clear understanding of the specific functions of their medications often experienced confusion, particularly when managing complex polypharmacy.33 This supported the assertion that clinical counseling must go beyond simple instructions to explain the why behind the regimen to prevent patients from “benchmarking” their own need for medication based on the absence of visible symptoms.29
Psychological aspects: the duality of fear and depression
The “fear of graft loss” emerged as a dominant psychological theme, serving as a powerful intrinsic motivator for adherence. This aligned with the literature suggesting that the traumatic memory of dialysis often acts as a driving force for recipients to protect their “gift of life.”4,10,28 However, our findings also indicated that this fear can become an emotional burden that contributes to chronic anxiety. The presence of depressive symptoms and emotional instability was identified as an important barrier to adherence, a finding corroborated by large-scale studies indicating that mental health disorders are strong predictors of MNA.18,23 Interestingly, although some quantitative studies have found no direct association between depression and adherence in specific cohorts,23 qualitative narratives in the present study suggested that depression undermines the “motivation for self-management,” leading to periods of apathy where medication schedules are neglected. Furthermore, the concept of “acceptance of illness” proved vital; as noted by Zachciał and colleagues, patients who effectively adapt to their chronic state without negative emotional reactions had superior adherence behaviors.5
Social support and cultural context in Türkiye
An important finding of this study was the critical role of social support, particularly family encouragement, in maintaining adherence. In the Mediterranean and Middle Eastern context, including Türkiye, the family unit often assumes a shared responsibility for the patient’s health.6,33 In this study, spouses and children frequently acted as “accountability partners,” providing reminders and assisting in medication organization, which effectively buffers the impact of patient forgetfulness.20,26 The cultural and regional context of Türkiye added a unique dimension to health perceptions. As observed by Akkurt and colleagues, patients in this region may exhibit a “center of control” influenced by spiritual beliefs, such as trust in divine providence.6 Although this can provide psychological comfort, it may also lead to a “palliative type of coping” where patients feel less personal autonomy over their health outcomes.19 Clinical follow-up in Türkiye should therefore incorporate culturally sensitive strategies that align medical necessity with these beliefs.
Health system–related factors and communication
The quality of patient-provider communication was identified as a major determinant of long-term success. Recipients who perceived their physicians and nurses as supportive and accessible reported higher confidence in their treatment.13,19 Conversely, conflicting information or a lack of empathetic communication served as barriers.29 This underscores the necessity of a multidisciplinary team approach, involving not only nephrologists but also transplant nurses and psychologists to address the biopsychosocial needs of the recipient.13,34 Systemic barriers, such as medication costs and pharmacy access, were less prominent in the present study compared with settings that have limited insurance coverage.7 This is likely due to the regulatory framework in Türkiye and similar settings where immunosuppressants are often subsidized.5,25 However, the occupational status of recipients has remained a factor, as employed individuals often struggle more with timing adherence due to busy work schedules, a trend also noted in Polish and Iranian cohorts.15,25
Strengths and limitations
A major strength of this study was the use of a qualitative descriptive design, which allowed for an in-depth exploration of the lived experience of kidney transplant recipients, capturing nuances that standardized adherence scales often overlooked.4,29 By focusing on the Mediterranean region of Türkiye, this study addressed a notable gap in the literature regarding regional adherence behaviors. However, several limitations must be acknowledged. The use of a snowball sampling technique may have introduced a selection bias, as participants who are more engaged with their health or the transplant community might be more likely to participate. The self-reported nature of the data was subject to social desirability bias, where patients may overreport adherence to avoid perceived reprimand from the clinical team.8,35 In addition, the cross-sectional nature of the interviews provided a snapshot of experience; longitudinal research is needed to understand how these perceptions will evolve over decades.7
Clinical implications and future research
Findings reported here have important implications for transplant follow-up care. First, routine screening for psychological distress and personality functioning should be integrated into clinical practice to identify patients at high risk for MNA.18,20 Second, patient education must be continuous and individualized, focusing on the long-term consequences of subclinical MNA.8 Third, leveraging social support networks by involving family members in education sessions can enhance the buffer against unintentional errors. Future research should focus on developing and testing culturally tailored interventions, such as mobile health applications or support groups, that specifically address the barriers identified in Mediterranean and Middle Eastern settings.34 Moreover, longitudinal qualitative studies are needed to explore how the transition from the “honeymoon phase” of transplantation to long-term maintenance affects a patient’s adherence persistence over time.22
Conclusion
Immunosuppressive medication adherence is a complex behavior driven by a balance between the fear of graft failure and the daily burden of chronic therapy. Although family support and a sense of gratitude facilitate adherence in the Turkish context, factors such as depression, routine disruptions, and spiritual perceptions of control present ongoing challenges. Enhancing long-term graft survival requires a shift toward patient-centered, multidisciplinary care that recognizes the recipient’s psychological state and cultural background as integral components of medical management.

Volume : 24
Issue : 6
Pages : 363 - 370
DOI : 10.6002/ect.MESOT2025.P159
From the Burdur Mehmet Akif Ersoy University, Bucak School of Health, Department of Surgical Nursing, Bucak, Burdur, Türkiye
Acknowledgements: The author thanks all participants for generously sharing their ideas. The author declare that they have not used any type of generative artificial intelligence for the writing of this manuscript or for the creation of images, graphics, tables, or their corresponding captions. The author has not received any funding or grants in support of the presented research or for the preparation of this work and has no declarations of potential conflicts.
Corresponding author: Deniz Tasdemir, Burdur Mehmet Akif Ersoy University, Bucak School of Health, Department of Surgical Nursing, Bucak, Burdur, Türkiye
E-mail: deniztasdemir@mehmetakif.edu.tr
Table 1. Thematic Framework of Factors Influencing Immunosuppressive Medication Adherence
Table 2. Representative Participant Quotations by Theme