Objectives: The transition from pediatric to adult health care services is a critical milestone for adolescents who have undergone solid-organ transplant. Despite medical advances, this period remains a vulnerable one due to changes in care structures, patient autonomy, and psychosocial challenges. Qualitative evidence exploring this transition experience is limited in the context of Turkish health care. In this study, we examined the lived experiences, perceptions, and expectations of adolescents and young adults who underwent pediatric kidney or liver transplant in Türkiye, with a specific focus on their transition to adult health care services.
Materials and Methods: A descriptive phenomenological design was employed. We conducted semi-structured interviews with 11 participants aged 16 years and older who had received a kidney or liver transplant during childhood. We collected data via telephone interviews, which were audio-recorded with informed consent. We conducted thematic analysis to identify core themes reflecting the participants’ transition experiences.
Results: Four major themes emerged from the analysis: (1) anticipation and anxiety of change (fear of leaving familiar pediatric care teams); (2) need for information and guidance (lack of structured transition education); (3) emotional ambivalence (feelings of independence mixed with insecurity); and (4) health care system barriers (perceived fragmentation and lack of continuity in adult care settings). Participants expressed a strong desire for more personalized, supported, and phased transition models.
Conclusions: The transition to adult care in pediatric solid-organ transplant recipients presents emotional, informational, and systemic challenges. Structured, culturally sensitive transition programs are urgently needed in Türkiye to optimize continuity of care and health outcomes.

Key words : Adolescent health, Pediatric transplantation, Qualitative research, Transition to adult care

Introduction
Advances in surgical techniques, immunosuppressive therapies, and long-term follow-up care have markedly improved survival outcomes in pediatric solid-organ transplantation, enabling most children who receive kidney or liver transplants to reach adolescence and adulthood.¹ As survival has improved, attention has increasingly shifted toward long-term outcomes, including treatment adherence, psychosocial well-being, and continuity of care across the lifespan. One of the most critical and vulnerable phases in this continuum is the transition from pediatric-centered to adult-oriented health care services. Health care transition is defined as a purposeful, planned process that addresses the medical, psychosocial, and educational needs of adolescents and young adults as they move from child-focused to adult health care systems. For pediatric solid-organ transplant recipients, this transition is particularly complex due to lifelong immunosuppression, risk of graft rejection, and the need for high levels of self-management and health literacy. Evidence has consistently demonstrated that the transition period is associated with increased risks of nonadherence, graft dysfunction, and loss to follow-up, highlighting the importance of structured and supportive transition processes.^1,2 Beyond clinical risks, qualitative research has revealed that transplant recipients have substantial emotional and developmental challenges during transition to adolescence. Adolescence is already characterized by identity formation, increasing autonomy, and renegotiation of parental roles; living with a transplanted organ adds an additional layer of uncertainty, vulnerability, and responsibility. In a qualitative systematic review from Li and colleagues, synthesized international evidence identified recurring themes such as adolescents’ struggle with independence, lack of transition readiness, anxiety related to adult care environments, and insufficient professional support.³ These findings underscored that transition is not merely a transfer of care but a profound life experience that shapes young people’s perceptions of illness, adulthood, and self-efficacy. Individual qualitative studies further illustrate how adolescents experience ambivalence during this period, that is, simultaneously desiring independence while feeling unprepared and insecure in adult health care settings. Studies conducted in different sociocultural contexts, including South Africa and the United States, have reported fears of losing trusted pediatric providers, difficulties navigating fragmented adult services, and challenges in assuming full responsibility for self-care.^2,4 These experiences are strongly influenced by the presence or absence of structured transition programs, continuity of health care professionals, and clear communication and education prior to transfer. Despite the growing international literature on transition in pediatric transplantation, evidence from middle-income countries and non-Western health care systems remains limited. In Türkiye, pediatric kidney and liver transplant programs have expanded substantially over the past decades, with increasing numbers of children surviving into adulthood. However, transition practices are largely unstandardized, and empirical data on how young transplant recipients experience the shift to adult care are scarce. A small number of Turkish studies have explored transition experiences in specific transplant populations, suggesting challenges related to autonomy, coping, and parental concerns, but comprehensive qualitative insights remain limited.⁵ Given the strong influence of cultural norms, family dynamics, and health care system organization on transition experiences, context-specific qualitative research is essential. Understanding how adolescents and young adults in Türkiye perceive, interpret, and navigate the transition from pediatric to adult transplant care is a crucial step toward developing culturally sensitive and effective transition models. Therefore, in this study, we explored the lived experiences, perceptions, and expectations of adolescents and young adults who underwent pediatric kidney or liver transplant in Türkiye, with a specific focus on their transition to adult health care services.

Materials and Methods

Study design
This study used a descriptive phenomenological design to explore the lived experiences of adolescents and young adults who underwent solid-organ transplant during childhood and subsequently transitioned, or were in the process of transitioning, from pediatric to adult health care services. Phenomenology was chosen to gain an in-depth understanding of participants’ subjective perceptions, emotions, and meanings attributed to the transition experience, rather than to test predefined hypotheses or generate theory. Descriptive phenomenology is particularly suitable for examining complex health care experiences that are insufficiently understood and deeply embedded in personal, developmental, and sociocultural contexts. In the context of pediatric transplantation, transition to adult care represents a multifaceted life event encompassing medical, psychological, and systemic dimensions, making a phenomenological approach methodologically appropriate.

Setting and context
The study was conducted within the context of the Turkish health care system, where pediatric and adult transplant services are typically delivered by separate clinical teams and institutions. Although pediatric transplant follow-up is generally multidisciplinary and family-centered, adult transplant care is often more fragmented and places greater emphasis on individual responsibility. At the time of this study, there was no nationally standardized transition program for pediatric solid-organ transplant recipients in Türkiye, and transition practices varied across institutions.

Participants and sampling
Participants were adolescents and young adults who had received a kidney or liver transplant during childhood and were aged 16 years or older at the time of the study. We used a purposive sampling strategy to recruit individuals who could provide rich and relevant insights into the transition experience. Inclusion criteria were having undergone kidney or liver transplant before the age of 18 years, being 16 years of age or older at the time of the interview, having experience with, or anticipation of, transition to adult health care services, ability to communicate in Turkish, and willingness to participate and provide informed consent. Exclusion criteria were severe cognitive impairment that would limit the ability to participate in an interview and acute medical instability at the time of recruitment. Our study included 11 participants. Sample size was determined by data saturation, defined as the point at which no new themes or meaningful insights emerged from successive interviews. Saturation was reached within the final interviews, supporting the adequacy of the sample size for phenomenological analysis.

Data collection
We used semi-structured, in-depth interviews to collect data, which allowed participants to freely describe their experiences while ensuring that key aspects of the transition process were systematically explored. An interview guide was developed based on a review of the literature on health care transition in pediatric transplantation and adolescent chronic illness. The guide included open-ended questions addressing experiences of pediatric follow-up care; perceptions and expectations of adult health care services; emotional responses to the transition process; perceived readiness and self-management responsibilities; information, education, and support needs; and barriers and facilitators encountered during transition. We conducted interviews by telephone, which provided flexibility and facilitated participation from individuals living in different regions. All interviews were conducted by a researcher trained in qualitative interviewing techniques. Interviews lasted approximately 30 to 60 minutes and were audio-recorded with participants’ permission. Field notes were taken immediately after each interview to document contextual observations, initial impressions, and reflexive thoughts, which were later used to support data analysis.

Data analyses
Interview recordings were transcribed verbatim and analyzed using thematic analysis, following an inductive and iterative process. Analysis was guided by the principles outlined by Braun and Clarke,⁶ while remaining consistent with a phenomenological orientation focused on capturing participants’ lived experiences. The analysis involved the following steps: (1) familiarization with the data, (2) initial coding, (3) theme development, (4) reviewing and refining themes, and (5) defining themes. For step 1, transcripts were read multiple times to gain an overall understanding of participants’ narratives. For step 2, meaningful units of text were coded line-by-line, focusing on experiences, emotions, perceptions, and interpretations related to transition. For step 3, codes were compared and grouped into broader categories, from which preliminary themes were generated. For step 4, themes were reviewed in relation to the entire dataset to ensure internal coherence and clear distinctions between themes. For step 5, final themes were clearly defined and labeled to reflect the essence of participants’ experiences. Data analyses were conducted manually to allow close engagement with the data. Throughout the analytic process, reflexivity was maintained by the research team to minimize the influence of preconceptions on interpretation.

Trustworthiness
To ensure rigor and trustworthiness, we followed established qualitative criteria of credibility, dependability, confirmability, and transferability. Credibility was enhanced through prolonged engagement with the data, use of verbatim quotations, and iterative comparison of themes across interviews. Dependability was supported by maintaining a clear audit trail documenting data collection and analysis decisions. Confirmability was addressed through reflexive journaling and team discussions to ensure that findings were grounded in participants’ accounts rather than researcher assumptions. Transferability was facilitated by providing detailed descriptions of the study context, participants, and methodology, allowing readers to assess relevance to other settings.

Ethical considerations
Ethical approval for the study was obtained from the Burdur Mehmet Akif Ersoy University ethics committee before data collection (date: 18.06.2025; No. GO 2025/1673). All participants were informed about the study aims, procedures, voluntary nature of participation, and their right to withdraw at any time without consequences. Verbal and/or written informed consent was obtained from all participants before interviews were conducted. For participants under 18 years of age, consent procedures were carried out in accordance with national ethical regulations. Confidentiality and anonymity were ensured by removing identifying information from transcripts and assigning numerical codes to participants. Audio recordings and transcripts were stored securely and accessed only by the research team.

Results

Participant characteristics
Our study participants included 11 adolescents and young adults who had undergone kidney or liver transplant during childhood. Participants were aged 16 to 24 years and were either preparing for or had recently completed the transition from pediatric to adult transplant care. Consistent with the Turkish sociocultural context, most participants reported strong family involvement in health care decision-making during childhood, with gradual expectations of autonomy emerging during adolescence.

Overview of categories and themes
Analysis of interview data yielded 4 main themes reflecting participants’ transition experiences. Themes were derived from broader categories capturing emotional, informational, and systemic dimensions of transition (Table 1). Category 1: emotional responses to transition; theme 1: anticipation and anxiety of change Subtheme 1.1: fear of leaving the pediatric care team. Participants frequently described strong emotional bonds with their pediatric transplant teams, whom they perceived as familiar, protective, and trustworthy. The anticipated separation from these long-standing relationships was a major source of anxiety, particularly among younger participants. I have been followed by the same doctors since I was a child. They know my whole story. Leaving them feels like losing a safe place. (Female, 17 years) In pediatric care, they treat you like family. I’m afraid that in adult care, I’ll just be another patient. (Male, 18 years) I grew up in that clinic. Thinking about not going there anymore makes me nervous. (Female, 16 years)

Subtheme 1.2: uncertainty about adult health care services. Participants expressed uncertainty and fear regarding adult health care settings, often describing them as unfamiliar, complex, and emotionally distant. This uncertainty was amplified by limited prior exposure to adult clinics. I don’t know how adult clinics work. I imagine it being more crowded and less caring. (Male, 19 years) Nobody explained what adult care would be like, so I keep imagining the worst. (Female, 18 years) Category 2: informational and educational needs; theme 2: need for information and guidance Subtheme 2.1: lack of structured transition education. Most participants reported that they did not receive systematic education or preparation for transition. Instead, transition was often communicated as an age-based requirement rather than a gradual process.

They just told me that when I turn a certain age, I have to go to adult care. That was it. (Male, 17 years) I didn’t get any training or explanation about what would change. (Female, 20 years) It felt sudden. One day you are in pediatric care, and then you’re not. (Male, 18 years)

Subtheme 2.2: unclear expectations and responsibilities. Participants described confusion about what adult care would expect from them, particularly regarding self-management, communication, and appointment scheduling. In pediatric care, my parents handled everything. In adult care, they expect me to know everything. (Female, 21 years) I wasn’t sure how often I should go for follow-up or who to contact when I had a problem. (Male, 19 years)

Category 3: developmental and psychosocial experience; theme 3: emotional ambivalence—independence versus insecurity
Subtheme 3.1: desire for autonomy and adulthood. Participants viewed transition as a symbol of growing up and becoming independent. Being treated as an adult was associated with pride and a sense of maturity. Going to adult care makes me feel like I’m finally grown up. (Female, 22 years) I want to manage my own health and not depend on my parents anymore. (Male, 20 years)

Subtheme 3.2: insecurity and fear of making mistakes. Despite the desire for autonomy, participants also expressed fear of making errors that could negatively affect their transplant outcomes. This fear often coexisted with limited confidence in self-management skills.

If I forget my medication or misunderstand something, the consequences are serious. (Female, 19 years) Being responsible is scary because there’s no room for mistakes. (Male, 18 years) Sometimes I wish someone would still double-check things for me. (Female, 21 years) Category 4: health care system-related factors; theme 4: health care system barriers and fragmentation Subtheme 4.1: fragmentation and lack of continuity in adult care. Participants consistently perceived adult health care services as fragmented and less coordinated than pediatric care. They reported difficulties in navigating multiple services independently.

In pediatric care, everything was organized. In adult care, you have to figure everything out yourself. (Male, 22 years)

Different doctors don’t seem to communicate with each other. (Female, 20 years)

Subtheme 4.2: reduced time and communication with health care providers. Shorter consultation times and limited communication in adult care settings were perceived as barriers to building trust and feeling understood.

Appointments feel rushed. There’s no time to explain how I feel. (Female, 18 years) In pediatric care, they listened more. In adult care, it feels very quick and formal. (Male, 21 years)

The transition from pediatric to adult transplant care was experienced as a multidimensional and emotionally complex process, shaped by anxiety, insufficient preparation, developmental ambivalence, and health care system barriers. Although participants valued increasing independence, the absence of structured, supportive, and culturally sensitive transition processes intensified feelings of vulnerability during this critical period.

Discussion
This qualitative study explored the transition experiences of adolescents and young adults who underwent pediatric kidney or liver transplant in Türkiye. The findings highlight transition as a multidimensional process shaped by emotional responses, developmental challenges, informational gaps, and health care system structures. Overall, participants’ experiences reflected a state of being “in-between,” that is, no longer children receiving family-centered pediatric care, yet not fully supported as autonomous adults. This observation resonates strongly with existing transition literature.^7-9

Emotional responses and anticipatory anxiety
One of the most prominent findings was participants’ anticipation and anxiety related to leaving pediatric care, particularly the emotional attachment to long-standing pediatric transplant teams. This mirrors international qualitative evidence demonstrating that adolescents perceive pediatric services as safe, familiar, and relational, while adult services are often anticipated as impersonal and task-oriented.^2,4 In their qualitative systematic review, Li and colleagues similarly identified fear of losing trusted providers as a central component of transition-related distress.³ In the Turkish context, this anxiety may be intensified by the traditionally strong relational bonds formed between families and pediatric health care professionals, as well as culturally embedded expectations of emotional closeness in care delivery. The abrupt nature of transition described by participants also aligned with prior research indicating that unplanned or age-driven transfers are associated with increased psychological vulnerability.⁷

Informational gaps and lack of transition preparation
Participants consistently emphasized a lack of structured information and guidance regarding transition, reporting uncertainty about adult care expectations, self-management responsibilities, and system navigation. This finding is highly consistent with international studies demonstrating that inadequate transition education contributes to confusion, anxiety, and reduced readiness for adult care.^1,8 Importantly, the absence of formal transition programs in Türkiye appears to mirror challenges reported in other health care systems lacking standardized transition pathways. However, in cultures where families traditionally play a central role in health management, the sudden expectation of independent self-care may be particularly challenging. Previous studies have shown that insufficient preparation for self-management during adolescence is strongly associated with nonadherence and disengagement from adult services.^4,10

Emotional ambivalence and developmental challenges
The theme of emotional ambivalence desiring independence while feeling insecure reflects a well-documented developmental tension in adolescents with chronic conditions.¹¹ In our study, participants viewed transition as both a marker of maturity and a source of fear, particularly regarding the possibility of making irreversible mistakes affecting graft survival. This ambivalence has been widely reported among pediatric transplant recipients and is closely linked to evolving identity, responsibility, and autonomy.^9,12 In Turkish society, where young adults often continue living with their families and parental involvement remains strong well into early adulthood, this developmental tension may be further complicated. Parents’ continued presence may provide emotional security while simultaneously limiting opportunities for gradual autonomy, a dynamic also described in previous transplant studies.¹³

Health care system barriers and fragmentation
Participants’ perceptions of adult health care services as fragmented, rushed, and less coordinated were among the most critical findings of this study. Similar system-level barriers have been reported across diverse health care settings, with adult transplant care frequently described as less holistic and less supportive than pediatric care.^14,15 The lack of continuity between pediatric and adult services, particularly the absence of shared clinics, joint consultations, or transition coordinators, appears to exacerbate feelings of abandonment and insecurity. Structured transition programs incorporating multidisciplinary coordination have been shown to be associated with improved adherence and reduced graft rejection.¹ The findings of our present study suggested that such models are urgently needed within the Turkish transplant system.

Clinical and system-level implications
Collectively, the findings underscore that transition should be conceptualized not as a single transfer event, but as a longitudinal, developmentally sensitive process. Transition programs for pediatric solid-organ transplant recipients in Türkiye should incorporate early education, gradual responsibility sharing, family involvement, and close collaboration between pediatric and adult teams. Culturally sensitive transition models that acknowledge family dynamics and provide structured guidance may help mitigate anxiety, enhance self-efficacy, and support continuity of care. Given the known associations between poor transition experiences, nonadherence, and graft loss, improving transition processes represents not only a psychosocial priority but also a critical component of long-term transplant outcomes.¹⁶

Conclusions
The transition from pediatric to adult health care services represents a critical and vulnerable period for adolescents and young adults who have undergone solid-organ transplant. The findings of this study demonstrated that transition is not merely a logistical transfer of care but a complex process shaped by emotional responses, developmental readiness, informational support, and health care system structures. Participants’ experiences revealed significant anxiety related to leaving pediatric care, insufficient preparation for adult services, emotional ambivalence regarding independence, and perceived fragmentation within adult health care settings. These challenges highlight the need for transition models that extend beyond age-based transfer and instead emphasize gradual preparation, continuity, and individualized support. Developing structured, culturally sensitive transition programs that actively involve patients, families, and multidisciplinary transplant teams may improve continuity of care, promote self-management skills, and potentially reduce the risk of nonadherence and adverse transplant outcomes. Addressing transition as a longitudinal process should be considered a clinical priority to optimize the long-term health and quality of life of pediatric solid-organ transplant recipients in Türkiye.