My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys

Abstract

Background:

Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey.

Methods:

Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in-depth interview.

Results:

Nineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of “normal” throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time.

Conclusions:

Having a patient view their Kidney Identity over time may support self-reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.

1 ∣. INTRODUCTION

Kidney transplantation is the treatment of choice for pediatric patients with kidney failure because of the benefits to growth, development, and QOL.^1,2 Poor adherence to posttransplant immunosuppressive regimens is a major cause of rejection and premature graft loss.^3-9 Nonadherence, which is estimated to be highest among adolescents,^7,10,11 is often affected by many factors, both clinical and nonclinical.

Although the factors that contribute to nonadherence and reduced self-management are multifactorial, decreased psychosocial functioning plays an important role.¹² Children living with a chronic illness are two to four times more likely to develop psychiatric disorders and social adjustment problems.^13-15 One contributing factor to decreased psychosocial functioning, illness uncertainty, has also been associated with nonadherence after a kidney transplant.^16,17 Illness uncertainty results from ambiguity, vagueness, unpredictability, or lack of information regarding an illness. This type of uncertainty limits one's ability to adequately interpret and respond to various situations and challenges.¹⁸ Unfamiliar experiences also increase anxiety and worry for patients and their caregivers, especially when they do not have the ability to understand and process these situations.¹⁹ Nonadherence can be seen as a direct result of the unmet information needs of patients and caregivers.^7,20,21

To improve outcomes for pediatric kidney transplant patients, a more comprehensive approach to understanding and addressing nonadherence is necessary.^22-24 This requires that all stakeholders develop a better understanding of the clinical and nonclinical factors that affect one's posttransplant journey. By gaining more contextualized insight about transplant journeys, clinicians and patients can potentially identify and address previously unrecognized modifiable factors that can negatively impact clinical outcomes.

One way to gain a more complete understanding of transplant experiences is to explore how an individual's personal identity may change throughout the kidney transplant journey as a result of kidney disease progression and treatment. Posttransplantation, individuals need to: (1) contextualize their own experiences and (2) facilitate a positive self-image, with the goal of regaining a sense of self-directed normalcy.²⁵ While developing a stable and affirmative sense of identity is key to helping patients feel their version of “normal” again, there is limited research describing the journeys individuals take after transplant to recalibrate a healthy sense of self. This study set out to explore the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey.

2 ∣. MATERIALS AND METHODS

The methods are presented utilizing the consolidated criteria for reporting qualitative research (COREQ) reporting guidelines (see Table S1).²⁶ We conducted interviews with pediatric kidney transplant patients and their primary caregivers. All interviews were conducted by a male pediatric nephrologist (AHP) with didactic and experiential training in interviewing and qualitative analysis. He was not the primary provider for any of the interviewed participants.

2.1 ∣. Study design

2.1.1 ∣. Study population

English-speaking pediatric kidney transplant recipients (7–21 years of age, who were at least 3 months posttransplant) and one family member were recruited from a single, large-volume pediatric transplant center in the United States and the IROC CEW.²⁷ IROC is a network-based learning health system working to improve the lives of children living with kidney disease, and the CEW is a group of engaged parents, patients, and other caregiver partners within the collaborative. Potential participants from the transplant center were identified via convenience sampling by identifying individuals with a scheduled transplant clinic visit. A recruitment flyer with study details was provided to the CEW group, and individuals were asked to contact the study team if interested. Based on previous experiences with qualitative research, we had a goal to recruit 16–24 participants. We continued recruiting participants until no new topics or themes arose from the interviews (i.e., data saturation).

2.1.2 ∣. Study procedures

Each participant participated in one 30- to 90-min interview in the clinic or online via Zoom. Youth and caregiver participants completed their interviews separately, unless participants were under the age of 12, then they were given the option to have a parent present during the interview. If youth participants under the age of 12 had a caregiver present, the caregiver was asked to participate only if they were asked a question directly by the youth participant.

Both youth and caregiver participants were asked to submit up to five photographs per topic that captured their feelings or experiences on the following four topics: (1) worry, (2) confidence, (3) similarity to their peers without kidney disease, and (4) differences from their peers without kidney disease. These four topics were chosen to help guide participants to think about and compare what they may view as normal and not normal throughout their transplant journey. The interviews were designed to understand the lived experiences of the study participants after receiving a kidney transplant, and this motivation was explained to participants prior to consent as well as during the interviews.²⁸ To structure and guide the interviews, we utilized photo elicitation, a qualitative method that uses images to prompt individuals to talk about their personal experiences and values, and develop an understanding of participant perspectives.^29,30 Individual participants were provided $25 gift cards at the completion of the study. The study was approved by the authors' Institutional Review Board.

2.1.3 ∣. Analysis

Interviews were audio recorded, transcribed, and qualitatively analyzed^31-33 using a thematic analysis approach to identify common themes. Using MAXQDA 2020,³⁴ two members of the research team (JCD, EB) completed an initial deductive analysis³⁵ of the transcripts using four a priori codes based on the photo-elicitation exercise: (1) worried, (2) confident, (3) similar to their peers without kidney disease, and (4) different from their peers without kidney disease. We completed an initial deductive analysis with the four a priori codes to help maintain alignment with the purpose of the research, such as to understand the information requirements needed to capture what normalcy means to the patients and caregivers. The photographs submitted by participants were not analyzed, but only used to help structure and guide the interviews as described earlier. After completing the initial deductive analysis, we explored additional themes in the subsequent rounds of inductive analysis.³⁶ From the inductive analysis, 10 new codes emerged, which resulted in a total of 14 codes (4 a priori codes and 10 inductive/emergent codes) (see Appendix A; Figure A1).

After the research team hit thematic saturation (i.e., no new themes emerged from the transcripts), the 14 codes were then iteratively organized into a hierarchical coding framework, which was discussed between several members of the research team (JCD, EB, AHP). During the iterative organization of the codes, the research team (JCD, EB, and AHP) looked to see which codes could be combined and ultimately fall under one higher level branch of the hierarchical coding framework (see Appendix A; Figure A1 for an example). After a series of discussions, the research team (JD, EB, and AP) reached a consensus on a final coding framework called the “Kidney Identity” framework (Figure 1), which consists of five high-level themes/tensions. Finally, after the framework was completed, JCD did a final round of analysis to identify any additional factors that may have influenced each of the five themes/tensions (Figure 2) and discussed these with the research team (JCD, EB, and AHP). Participants did not provide feedback on the findings.

FIGURE 1.

Kidney Identity figure - This figure depicts the Kidney Identity and its five tensions: (1) exchanging Information, (2) managing transitions, (3) building confidence, (4) telling my story, and (5) normalizing the journey, where each petal of the Kidney Identity flower displays one of the five tensions. Within each petal there are two different sides of the tension, which can fluctuate throughout a patient's kidney transplant journey

FIGURE 2.

This figure depicts each of the Five tensions that make up the Kidney Identity and the shared factors that move patients along each tension

3 ∣. RESULTS

We conducted 19 interviews with 10 pediatric kidney transplant recipients and 9 of their primary caregivers, of which 2 (1 patient and their parent) were recruited from the IROC CEW (Table 1). We identified five specific themes our participants associated with changes or transformation of self-image or personal identity: (1) exchanging information (information consumers vs. information contributors), (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). We refer to these as tensions because they reflect moments of both positive and negative changes of identity throughout the kidney transplant journey. Next we describe each of these tensions, highlighting how they fluctuate throughout the kidney transplant journey. Quotes from transplant patients are identified by T# and their primary caregiver as P# and are organized by theme-specific tables (Table 2).

TABLE 1.

Participant demographics

Characteristic	Value
Age in years – median (range)
Transplant participants	14.2 (7–20)
Caregivers	50.0 (37–75)
Gender – n (%)
Transplant participants
Male	7 (70%)
Female	3 (30%)
Caregivers
Male	3 (33%)
Female	6 (67%)
Years since transplant – median (range)	8.5 (2–14)
Patients requiring dialysis prior to transplant	6 (60%)
First transplant	10 (100%)
Donor type
Living	8 (80%)
Deceased	2 (20%)
Etiology for kidney failure
Acute kidney injury	1 (10%)
Congenital anomalies of the kidney or urinary tract	4 (40%)
Genetic kidney disease	1 (10%)
Unknown	4 (40%)
Race and ethnicity (participants could select more than one)
White	16
Black or African American	1
Asian	2
Other	2
Hispanic	0

TABLE 2.

Kidney Identity tension quotes

Exchanging information
Information consumers	P7: “Early on… I found a lot of online groups, Facebook groups, and a Google group for parents of kidney kids that were super helpful.”
	P14: “[they] didn't hear a lot of the positive stories… and it probably would have made it a little less stressful if we had heard a few positive stories.”
Transition from information consumers to contributors	P7: “I think at first… I was taking in information, and then I was more of a contributor… [Hearing other family's stories is] not as big a part of my life anymore as it used to be, but still helpful… I mean, [online support groups are] just where I've learned a lot and share a lot of my knowledge.”
	T9: “How much they have been a part of it, and just to look at the whole thing as a whole and to see what joy they have created, what a life that they have created, and that's what I want to give back. That's why I want to go into alternative medicine because it's the doctors. It's the doctors, the love that I felt from them and the connection that I felt with them. It's the thing that has formed my life completely.”
Information contributors	T13.2: “I went the whole three years, and I was able to talk to the younger people there who had kidney transplants. I could talk them through it and teach my own way. I also looked up at the people older than me so they could tell me about their experience.”
	P5: “So I will tell this story… to get people to take some money out of their pocket [at charity events], because there are kids who need it.”
	T11: “I'd probably tell them about how I got mine out, and how they could possibly get theirs out if they didn't like it. I would also tell them how much work I had to do to get there of course.”
	P3: “Anything that we can do to make it easier for the next family, I'm always willing.”
Transitional management
Family management	P3: “It's the whole family… because it doesn't just affect me and T3, it affects everybody in the family… [T3 is] really, really, really good ‘bout it and it's not just him and me, the whole family's involved. His brother is a big part of it because T3 can't hear very well… He can't hear the alarms. So, he has to rely on somebody else to help him.”
	T4: “Majority of the time my dad always tells me whatever my medicines are, or when I go to my mom's, they always tell me across the room, ‘Hey, it's time for your medicines.’”
	P4: “The problem with teenagers is, I've been told, they forget, and they don't think of it much anymore…and that's what causes the biggest problem for the rejection of an organ in the body… I am constantly worried when he is not around me because I feel that I have as a father responsibility to make sure that my son [is okay]. He's a teenager… I have to keep eyes on him to make sure [he is okay].”
	T14: “Because, well, I was going to die, but then luckily since Dad gave me his kidney. I stayed alive…”
Transition from family management to self-management	P11: “T11 has been more and more responsible for her meds. We've taken off our alarms. She has an alarm on her phone now. She missed her meds once and it was the next day. It's not like we can go back and make them up again. I'm not going to freak out about it that much. It's like, ‘All right, we missed one, we'll talk about it, we'll move forward.’”
	T4: “They've been supporting me and helping me all my life, so right now I'm just starting to take baby steps to support myself.”
	P15: “It was just a couple of years ago I had to talk to everybody about cutting up his food for him and feeding him. I'm like he's beyond that, you know he doesn't need that… but I think for so long they were used to doing so much for him and helping him… they're doing it out of love for sure but it's just… And he allows it to happen.”
Self-management	T11: “You made a specific goal, and it was specific, and you work toward it and you got it… So, you really learned how to take care of yourself to the point that we were like, we don't need this because you can take care of yourself without it.”
	P3: “What is so hard about that? Most people get up in the morning and make a pot of coffee. It's no different than getting up in the morning and taking that handful of medication. You have to do it to feel right. You drink that cup of coffee to feel right, take that handful of medication to feel right. It's a simple thing. It's a routine.”
	T13.1: “Really, just making sure I have medicines with me. Even if I'm only going out for a little bit, just to hear like, hey, I want to hang out more. So, I have my meds with me. I have water with me.”
Building confidence
Worry	T7: “I's a form about before surgeries, and I'm scared before surgeries sometimes.”
	P14: “This was the only school picture I could find… There's this level of worry sending them off to school. At the beginning of the school year, there's a lot of worry about, okay, we have to have all the papers in order. We have to jump through extra hoops. We have to have extra doctors' appointments; we have to adamantly communicate with a new teacher. We have to make sure that they fully understand this is medically necessary, you have to let him do this.”
	T14: “Because I am worried that my kidney won't last long and that I'll have another transplant in a few years.”
Transition from worry to confidence	T3: “It helped me be more confident… Just talking to other people about getting disease… if I just tell people they'll understand. Back when I felt like nobody understood, but I know that people will if you just tell them.”
	T9: “So from the very outset came that confidence, and also of this feeling like other kids with kidney transplants. So, this connection, right, started this thing that I needed to share this experience. I can't keep this to myself because that will kind of darken my life in a way about, ‘Oh, I have to worry about this. I have to worry about that. I can't do this. I can't do that.’ I have to share that.”
	P15: “It's a constant worry but we've seen so much success that it's hopeful that the outcome is going to be a lot greater than we first expected, and I think you grow a lot, you learn a lot in the journey, and you just get to keep plugging away with it.”
	P4: “I see if he doesn't have a fever then I will give him some water, he wants pain [medicine] to relax and I say ‘Okay, well if you want, I can give you Tylenol that makes it better.’ That is again, part of being worried… Then when he's happy, he's laughing in the other room… He's in his room, he's sitting there and watching TV or laughing because[the] movie is comedy or something like that, I feel okay.”
Confidence	P5: “So, I'm happy to know that actually if he really wants to do something that he can. When it comes to schoolwork, he's not that good. But, when he goes to the videos of the online classes, he just goes through them. He totally gets it. He's half watching it and half doing something else, but he still gets it… they're very repetitive and very boring. But he still goes through them super-fast. That tells me if he wants to do it, he can do it. I'm not really… worried about him getting through life. Because if he wants it, he's going to do it.”
	T5: “I'm proud to have these scars. I think they look awesome… I'm proud of them. I've been through a lot. I think my scars are a very good representation of that. I think when I have these scars, I feel empowered. I feel like I can take on the world when I look at my scars. I feel strong. I feel proud and happy.” Interviewer: “How do you feel when you sing that song?” T15: “I feel strong.”
Telling your story
Hiding	T7: “Cause not that many people have pee tubes” Interviewer: “Oh okay. And, I remember last time you had mentioned that it's something you don't really like other people to know about, that you have, right?”
	T7: “Mm-hmm…” (affirmative).
	T13.1: “After transplant, I felt more disabled, because I was in pain from the kidney transplant, and I was more worried. I was more staying away from people”
	T5: “People will put you in a group or people… won't always react positively. At times, you really have to act like you aren't (just) to fit in especially in high school. It's like, oh, I have lots of friends. I'm moderately cool… I'm friends with the top people. I'm one below that…You really have to act like everyone else especially in high school because otherwise you get alienated. You can't always be yourself in high school. You have to conform to everyone else.”
Transition from hiding to self-expression	T3: “Over time I just kind of ignored it. I didn't really care what people thought of me if I was different. I still don't really care if people think I'm different. It's just kind of a thing over time where you just, you're like ‘you're different, get over it.’…Back when I had the kidney transplant it made me feel really bad because my body just wasn't normal you know. I got over it.”
	T13.2: “I guess at some point I just kind of stopped caring. Like I wouldn't hide in the bathroom and put it on and tuck it under my clothes. I would just be like ‘You know, they're my friends, it's not like they're going to think any differently of me.’”
	P14: “There's part of this that makes me feel confident in that he knows wha's going on. This is a normal part of his life. This is part of the story that he's going to write. And there's part of me that worries because of the story, that tha's the part of his life…”
Self-expression	P5: “Yeah, exactly. So, but this, he's happy to be who he is. And he's not… I don't think he's doing it for anybody else. Think he's doing it for himself.”
	T5: “Camp [is] a really cool place. It's a place for people who also have medical issues. It's just a teen retreat week… it's a place where everyone has these issues. It's a place where everyone can be themselves, and be not judged for it, and can be accepted really fully. Everyone's allowed to be really confident there. At this place you can be completely yourself. It will be totally okay. The guy… he's played for a really long time. He was really nice. He really boosted my confidence about music. He said I was really good for nine months, which is how long I've been playing. He's like, ‘You're a really good artist. I think you can do something. You'll be somewhere.’ I was like, ‘Wow. That's really amazing.’ He's crazy. He's so good on his sax. We just played music together. It was really nice.”
	P1: “So he's got his keys because he's really into keys, and his mismatched…and whatever, probably popsicle all over his face. It's moments like that where I just go, ‘Hey, he's just himself, and we're good. We're just going to let him be himself.’”
Normalizing kidney transplantation
Feeling different	P9: “This is public schoolers. Not only do you have a transplant, you've gone through these types of experiences, you're not a public school student, you've just had different experiences, and how to merge with a group like that. You're not into modern music or culture, modern culture.”
	T3: “I feel different people might treat you differently. They might treat you in a special way, but… you just want to be treated like everybody else… You shouldn't have to be treated differently because you have a kidney disease. You shouldn't really have to, but sometimes you have to when it comes to things like physical sports and stuff like that. Not all the time. That's one way it can be pretty bad.”
	T3: “My medicine makes me feel really different because I have to take them to protect my kidney. Other people, they just take medicine… to get over a cold or something. I have to take medicine to basically stay alive. It makes me feel really different from everybody else. I take these medicines that nobody else can take. I feel like that… it just makes me feel different taking these medicines.”
Transition from feeling different to feeling similar	T13.2: “… just through puberty to maturity, I kind of grew to be, like, yes this happened, but I'm still me, I'm not that much different than anyone else.”
	P15: “This was just… this was the kids before bed. Their big sister reading to them. This is something that I think definitely hits home for me… T15 was on dialysis for so long that he wasn't when he was younger we weren't able to snuggle him or cuddle him or… he was always in bed earlier because he had to be hooked up to his machine, so things like that, it's just like a freedom that we kind of take for granted and when you're thinking about it and going back to it it's like, ‘Wow, this is awesome that they can do this’.”
	P11: “Well, stuff like this, I'm always like, ‘She's so healthy!’ Like, ‘She's running!’ She is doing these activities all these other kids can do. Participant doesn't remember it, but I remember when she couldn't walk to the park, or when she could barely walk half a block. Walking to the end of our alley and back was a big outing. To see her doing stuff like this and growing strong and active is just awesome.”
Feeling similar	T11: “I was kind of in a place with lots of other people who had had the same thing [as] them. I just felt… like I fit in there.”
	T15: “I'm not just a kid with a kidney transplant. I can also act like a regular kid.”
	P13: “I remember thinking, man, she's like other kids. She's not a kidney kid 100%, she's actually going off to college and moving into a dorm. And that's a picture of her and her friend in my daughter's dorm room the day we moved her in.”
Kidney Identity quotes
	P13: “There's been a lot of times where it's difficult to accept people's help, accept people's recognition of our situation because… sometimes as a parent of kids with this situation, you feel like, I just don't want people to pay special attention to us, I just want people to treat my family like we're any other family. And then there's other times where you recognize that, wow, people really care a lot about us and want to do things for us and it's really cool, but depending on what frame of mind I'm in, I can switch between the two. Even in that same day, I might've thought that I just wish we didn't have to do this event at all. I wish people just wouldn't go out of their way and do that kind of thing for me because I just want to be normal. And then, maybe an hour later I might be like, man, look at this, this is just amazing.”

Note: Quotes from participants for each of the five tensions. The colors of the table are referencing the shared factors which influence one's Kidney Identity tensions, which can be seen in Figure 2. Red: Developmental Factors; Yellow: Community/support systems; Orange: Social milestones; Green: Identifying QOL expectations or metrics

3.1 ∣. Exchanging information: Information consumers versus information contributors

Receiving a diagnosis of kidney failure can be overwhelming for patients and families. The complexity of kidney transplantation makes it difficult for pediatric kidney transplant recipients to advocate or make decisions for themselves. Families often need substantial support navigating treatment options and care plans. Often, the information families receive from their hospital and care team does not adequately meet their needs, resulting in many families utilizing online resources or communities, where they learn from other families with similar experiences (P7). Caregivers expressed the value of hearing both positive and negative experiences of others. Caregivers explained that during the training they go through to prepare for their child's kidney transplant, they rarely hear positive stories, which they believed could help them feel more confident about what their child is going to go through (P14). Other caregivers remarked that online support groups helped them realize they were not alone in their experience and “…this isn't just [my] child [having gone through a transplant]” (P14).

In addition, caregivers described how online transplant support groups supplemented the information they received from their hospital-based care teams, especially when exploring the day-to-day routines for their child. Many of the caregivers wanted to leave, “no stone unturned” (P7), when it comes to advocating for and improving the health of their child. Interestingly, as their child's care plan stabilized, their use of online resources decreased (P7). However, whenever a patient's condition or care plan changed, the family often returned to these groups to gain additional insight and support. As patients and families progressed along their transplant journey, they became more familiar with expectations and the requirements to maintain the patient's health and well-being, contributing to their own expertise. Developing patient expertise³⁷ supported the transition from individuals being primarily information consumers to being information contributors, sharing knowledge they have acquired as part of their transplant journey with others (P3).

Furthermore, age and experience influenced information exchanging behaviors and needs. As pediatric patients matured and became more aware of their clinical condition, they became both information seekers and providers, much like their caregivers (T9, T13.2, T11). Patients used their own posttransplant experiences to provide support to others undergoing similar treatments. Multiple participants described the value in sharing their experiences and hearing the experiences of other transplant patients at a summer camp for pediatric patients with various chronic diseases (T5, T13.2).

3.2 ∣. Managing transitions: Family management versus self-management

Throughout the kidney transplant journey, pediatric patients require different types and levels of support from their primary caregivers to maintain their health and stay on track with their care. Not only did our patients describe the support they received from their parents or caregivers (T4, T14), these caregivers explained how they, in turn, relied on the support of other family members to help manage the complexity and time-consuming nature of the child's diagnosis. This reflects a family-oriented approach many caregivers took toward their child's illness (P3). As a result, clinical setbacks impacted the entire family, and were addressed together as opposed to something the patient managed alone.

As patients became more familiar with the tasks required to maintain their health, they transitioned from relying on their family to becoming more self-sufficient. Patients and caregivers described how the youth transplant patients took on more responsibilities to manage their routine and complex needs over time (P11, T4, P15, T11, P3). These self-management tasks ranged from simple tasks, such as setting medication reminder phone alarms, to more complex tasks, such as goal setting (T11). As expected, transitioning to self-management happened in conjunction with significant developmental and social milestones in a patient's everyday life, especially as youth recognized the impact of their kidney transplant on activities such as going to school, playing sports, participating in parties, or attending concerts (T13.1). Interestingly, the transition from family management to self-management was not unidirectional, with fluctuating levels of self-management (T4). For example, if a patient forgot to take their medications, parents described how they turned these mistakes into learning opportunities focusing on the importance of personal responsibilities (P11).

3.3 ∣. Building confidence: Worry versus confidence

Understandably, a diagnosis of end-stage kidney disease can generate significant worry and anxiety about a child's prognosis, life expectancy, and potential QOL (P14). The high frequency of anxiety and worry resulted in individuals adapting and getting used to their constant worries (P15). The fear of graft failure tended to surface with any new health concern (T14). The complexity of navigating a child's healthcare needs, such as making and attending frequent appointments, administering medications, and coordinating laboratory testing provided additional sources of worry and stress (P14).

As individuals learned to cope and process their fears, they transitioned from worrying about every detail to accepting and being more comfortable with their lives after transplantation, resulting in less anxiety (P15, P4, P5). Community support from other transplant patients played a key role in helping individuals process new fears or complications (T3, T9). Having an understanding and empathetic support system, especially from those who have similar experiences (e.g., friends at camp), was extremely important for maintaining a positive outlook on their illness after experiencing setbacks. These relationships provided the support necessary for individuals to be more comfortable with their illness and build confidence. As our participants gained more confidence, previously stressful and anxiety provoking items (e.g., transplant scars) led to feelings of empowerment (T5). Although the seriousness of a kidney transplant initially led to feelings of worry and anxiety, as patients became more comfortable with their illness and found community among other transplant patients, their worries were mitigated. They became more confident and even proud of their transplant story.

3.4 ∣. Telling one's story: Hiding versus self-expression

When navigating youth and adolescence, an important part of discovering one's current or future identity is learning how to express one-self by communicating personal stories. Patients described that during their preteen to teen years, juggling who they want to be with other people's expectations or assumptions was difficult (T5). Individuals also stated that the added layer of complexity around having an illness made it more challenging to tell their story, develop boundaries around how much of their illness defines their story, and decide with whom they want to share their stories (T7). Patients discussed feeling a need to hide their illness based on previous negative experiences and interactions. In addition, physical feelings such as pain interfered with our participants' desire to share their stories with others (T13.1).

However, as patients progressed along their kidney transplant journey, many started to feel more confident in expressing themselves and communicating details of their transplant story with others (T3, P5, P14). Individuals became more comfortable sharing the physical aspects of their illness, such as letting others see their scars or kidney guards (T13.2). When patients did not have the ability to express themselves and tell their story through words, they used alternative methods, such as playing the guitar (T5). Finally, patients stated the importance of having a community of supportive people who not only understood their experiences, but also helped them with their own self-expression (T5). While patients often began their journey unsure of themselves and what to expect from their illness, as they grew with their illness, their increased self-expression built confidence in the person they have become.

3.5 ∣. Normalizing kidney transplantation: Feeling different versus feeling similar

At different points in their transplant journey, participants discussed their struggle to find a sense of their own “normal.” One parent described hearing their child's diagnosis and quickly having multiple questions about what their life would be like, “We had all these questions about normal kid things and we're not even a sports family, but would he be able to do sports if he wanted to?” (P7). The uncertainty of what was to come for the patient often left the patient and their family feeling isolated (P9). The everyday requirements that come with maintaining one's health after a kidney transplant further exacerbated feelings of being different from their peers without a chronic illness; participants described having to take medication daily to save their life when their peers may only need to take medication when they develop a cold (T3). Participants described insecurities about the physical restrictions and daily requirements of their illness, and that when others brought up or pointed out their differences from peers, this only reinforced those fears (T3).

In addition, participants described experiences that helped them feel more similar to their peers without chronic illness. T3 described the importance of being able to eat whatever they wanted following their kidney transplant, as they were no longer constrained by the strict dietary restrictions they had while on dialysis. As participants aged and matured, they stopped worrying about what others thought of them (T13.2). Finally, finding community with other transplant patients helped foster a sense of and build confidence in their identity (T11). Although having a kidney transplant can have a lasting impact on both patients' and their families lives, as they all become more comfortable with the patient's condition, they begin to develop their new “normal” (P15, P11, T15, P13).

3.6 ∣. The Kidney Identity framework

The five themes/tensions experienced as part of the postkidney transplant journey form a patient's “Kidney Identity” (Figure 1): (1) exchanging information (information consumers vs. information contributors), (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). This Kidney Identity provides a framework to describe the changes throughout the transplant journey from diagnosis to posttransplantation. Interestingly, this transition is not unidirectional from negative to positive, but involves participants moving in both positive and negative ways. The Kidney Identity captures the complex accounting of a patient's transplant journey and reveals tension shifts that may have occurred throughout the process. For example, when patients experience more positive outcomes with their health, they begin to feel more confident, are more comfortable sharing their story and expressing themselves with others and become increasingly self-sufficient and independent. However, as setbacks occur in a patient's care or other areas of their life, they may regress in one or all the tensions.

In addition to the influence of clinical outcomes, nonclinical factors also drive the positive and negative changes that occur throughout the transplant journey. We identified four nonclinical shared factors (Figure 2) that influence these transitions across the five Kidney Identity tensions: (1) developmental capacity, (2) social milestones, (3) community/support systems, and (4) QOL expectations (i.e., what individuals expect for a baseline quality in their life, such as their ability to engage in activities) as well as how these expectations have changed. These additional shared factors further illustrate the complexity surrounding an individual's kidney transplant journey. These nonclinical factors provide additional insight into the positive and negative shifts that occur across the five different tensions of the Kidney Identity framework.

4 ∣. DISCUSSION

Our study provides additional evidence to support the holistic benefit kidney transplantation provides to youth with kidney failure. A patient's Kidney Identity ties together multiple facets of their life including clinical, developmental, and social. However, for many patients and families, the kidney transplant journey is filled with uncertainty, making it difficult for individuals to know where they may need help or support. Therefore, the Kidney Identity provides a framework and language to support the information needs of patients and families as they recalibrate their understanding of normalcy throughout their transplant journey. Uncovering these unmet needs allows all stakeholders (patients, caregivers, and clinicians) to collaboratively address previously unrecognized barriers and work toward improved outcomes for patients and their families.

The relationship between QOL and clinical outcomes after undergoing kidney transplant is bidirectional: QOL is impacted as a result of changing clinical outcomes^38,39 and clinical outcomes change as a result of QOL.^40,41 In addition, social outlets like peer mentoring have been shown to improve clinical outcomes and increase self-management for pediatric transplant patients.⁴² The Kidney Identity, its tensions, and the drivers that affect the tensions add to this body of work by demonstrating the complex nuances that can affect the transplant journey. By shedding further light on these nuances, our work has the potential to support pediatric transplant patients, their families, and clinical teams in knowing the challenges (clinical or nonclinical) that affect one's Kidney Identity and their associated clinical outcomes. A well-formed identity is integral to developing a sense of normalcy for adolescents after kidney transplant.²⁵ Similar to Liu et al., our work demonstrated the importance peer connections play in supporting individuals after transplant.⁴³ Yet, it is important to recognize that pediatric patients living with chronic illnesses often develop a sense of a “new normal” resulting from their illness journeys.⁴³ Highlighting these changes helps individuals to better adapt and not have unrealistic expectations. The Kidney Identity provides a framework to assess and track individuals as they develop their new identities, potentially providing additional opportunities for targeted therapeutic interventions to support those who are struggling.

One of the major challenges faced by youth, adolescents, and young adults after transplant is medication adherence. While multiple studies have investigated the factors that lead to nonadherence^7,24,43-45 and ways to improve adherence after transplant,⁴⁶ nonadherence continues to be a problem.^23,44 While structured tools – such as barrier assessments – provide opportunities to help address common issues faced by individuals after transplant,⁴⁷ individuals face challenges that are personal and unique.⁴⁸ Understanding and detailing an individual's Kidney Identity through each of the five tensions may provide additional opportunities to surface potential adherence barriers. In addition, as we have previously described,²⁸ photo elicitation could be used as a tool in clinical settings to support this discovery. Our work, describing the Kidney Identity and the utility of photo elicitation, can help provide clarity for patients by identifying how aspects of their clinical care – such as medication adherence and self-management – are affected by the highs and lows of their transplant journey and changes in their Kidney Identity.

Recognizing the transitory nature of the Kidney Identity tensions after transplant provides additional context to the challenges adolescents face transitioning from a pediatric, family-oriented model of health care to an adult, independent model. Adolescents and young adults who have chronic illnesses are exposed to many factors during this period of transition from adolescence to young adulthood,^49,50 which can affect the patient's clinical outcomes and other aspects of their life. Having knowledge of one's Kidney Identity and how this identity fits into the larger picture of life and illness transitions can provide more clarity to patients and their families, such as deciding on when to seek help, when to prepare for changes, or what they value during these tough times.

Our study had several limitations that need to be considered. Our population was predominantly recruited from a single hospital, and while we reached data saturation, the number of participants recruited was relatively small. Additionally, our participants had a wide age range, which we recognize may have influenced our findings due to participants' developmental stages, life experiences, and other age- based considerations. While we are unable to explore the role of age on the Kidney Identity due to our small sample size, we felt that it was important to include younger participants as their perspectives are typically not addressed in this type of work. In addition, a majority of our participants were not newly transplanted, thus recall bias from participants could affect their perceptions. Despite the fact that we had these wide ranges in both age and time since transplant, the themes captured were consistent across all participants. Finally, we did not review the Kidney Identity and its associated five tensions with transplant patients and their families. As part of our future work, we plan on getting feedback as well as validating the overall concept of the Kidney Identity and explore its potential feasibility as a novel clinical intervention to improve outcomes after kidney transplantation.

In conclusion, the Kidney Identity framework can help individuals regain a sense of normalcy by surfacing the five Kidney Identity tensions and making them visible to all stakeholders. It also has the potential to reduce uncertainty and provide additional context to support patients and families, leading to improved health outcomes. Future work will focus on the development of methods to measure comparisons and finally develop interventions to support the positive facets of one's Kidney Identity.

Abbreviations:

CEW

Community Engagement Workgroup

IROC

Improving Renal Outcomes Collaborative

QOL

Quality of Life

APPENDIX A

FOURTEEN TOTAL CODES

Four A Priori Codes:

(1) worried, (2) confident, (3) similar to their peers without kidney disease, and (4) different from their peers without kidney disease.

Ten Inductive/Emergent Codes:

(1) support, (2) guilt, (3) communication through self-expression, (4) family management, (5) self-management, (6) information sharing, (7) communication with clinician, (8) normalcy, (9) identity, and (1) information need.

FIGURE A1.

Example iteration of the hierarchical coding framework

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available on request from the corresponding author JCD. The data are not publicly available due to information that could compromise research participant privacy/consent.