My Kidney T.R.E.K. - Thinking, Reflecting, and Empowering Kidney Transplant Patients, through technology.

Abstract

Adolescents and young adults with kidney transplants face unique challenges as they transition toward independent self-management. These youth need tools that not only support skill-building but also foster reflection, a key component of self-management. To address this need, we created a digital prototype designed to help users reflect on their transplant journey through storytelling and evaluated it in a study with 23 participants (13 youth and 10 caregivers) using. Participants found value in engaging with the prototype, which helped them reflect on their past experiences, gain insight into their current journey, and envision their future. Youth, in particular, reported increased self-awareness and confidence in managing their health. Based on these findings, we present design recommendations for future digital health tools aimed at supporting self-management in youth with chronic conditions.

Introduction

A diagnosis of severe chronic illness in childhood has a profound and lasting impact on both affected youth and their families.^1–4 For adolescents and young adults (AYAs) with End-Stage Kidney Disease (ESKD) who receive a kidney transplant, the experience can be particularly disruptive, shaping their lives in ways that differ significantly from their healthy peers. While many eventually report feeling “normal” post-transplant,⁵ the path to achieving this sense of normalcy is often complex and nonlinear. It involves navigating a dynamic tension between managing a chronic medical condition and engaging in age-appropriate developmental and social activities. This process fluctuates between periods of difficulty and times when health-related responsibilities are more seamlessly integrated into daily life.^3,6 As a result, youth kidney transplant recipients frequently face challenges with self-management, particularly adherence to post-transplant medication regimens, a leading contributor to graft rejection and premature allograft failure.^7,8

To more effectively support this population, it is critical to adopt a holistic perspective that considers not only clinical outcomes but the broader trajectory of their health journey. Capturing this journey offers opportunities for patients and families to reflect on their experiences, recognize personal challenges and successes, and engage more meaningfully in self-management. While previous work has explored the collection of individually curated or patient-generated data,^9,10 these efforts have often emphasized structured or quantitative outcomes, offering limited insight into the personal goals, values, and priorities that matter most to patients and families. In contrast, narrative-based methods, including personal storytelling, offer a promising approach for surfacing the complexity of transplant experiences by supporting guided self-reflection, revealing unrecognized barriers, and fostering resilience in ways that can ultimately enhance long-term outcomes.

In our prior work, we found that prompting youth transplant recipients to reflect on specific aspects of their transplant journey provided the structure necessary to elicit rich, detailed narratives.⁶ These stories yielded valuable insights into their lived experiences and helped identify barriers to care that may not otherwise emerge in traditional clinical interactions. Building on these findings we developed and evaluated a novel mobile prototype designed to capture personal stories and support youth in reflecting on their transplant journeys as a means to facilitate self-management, goal-setting, and communication. In this paper, we present feedback from youth transplant recipients and their caregivers on their experiences using this prototype and highlight the types of insights such a narrative-based approach can generate to inform more patient-centered care.

Methods

Study Population and Recruitment

All participants were recruited from Seattle Children’s Hospital transplant center via convenience sampling, coinciding an upcoming transplant clinic visit. Youth pediatric kidney transplant recipients and their caregivers were eligible to participate if youth were between the ages of 12 and 21, >= 3 months post-transplant, had non-failing kidney function (GFR > 30 ml/min/1.73m2), had the cognitive ability to complete all activities, and access to an electronic device that was able to connect to Wi-Fi/internet. All study procedures were approved by both Seattle Children’s Hospital and University of Washington’s Institutional Review Boards.

My Kidney TREK Technology Probe

The My Kidney Thinking, Reflecting, and Empowering Kidney Transplant Patients (My Kidney TREK) technology probe was designed to support individual reflection of one’s transplant journey and facilitate agency, self-efficacy, and self-management for both youth and their caregivers. The probe is the culmination of multiple published^3,6,11,12 user centered design projects to understand the unique information needs of youth kidney transplant recipients. It is a mid-fidelity technology probe created in Figma, a web based digital prototyping platform¹³ and consists of three components (storytelling, clinical result tracking, and medication adherence tracking), however, in this manuscript we focus on the storytelling component only, referred to as the Kidney Journey Stories (KJS) component (Figure 1). The stories component is designed to provide youth kidney transplant patients and their caregivers with a comprehensive view of their kidney transplant journeys via stories. The stories component highlighted three different stories along the transplant journey, which were collected via the stories survey: (1) one story from the past , (2) one story from the present, and (3) one story about the future (e.g., envisioning a time when they or their child are independent). For each of these time points we collected four types of information via the survey: a personal photo, a written or audio recorded story, their Kidney Journey (KJ) status for that time,³ and selected story categories⁶ (e.g., Responsibility and Planning for the Future). The Kidney Journey framework, which informed the design of the KJ status (i.e., the Kidney Journey Visualizer), describes five dimensions (Telling your transplant story, Exchanging information, Managing transitions, Building confidence, and Normalizing the transplant journey) which can be used to describe the abstract and complex journeys patients and families experience after transplant, as they attempt to establish a new state of feeling normal again.^3,5 A unique and individualized prototype was created for each caregiver or youth participant.

Study Procedures

After obtaining consent and assent, participants completed a series of study related activities focusing on the overall technology probe. All youth and caregiver participants completed study procedures individually unless requested by the caregiver or youth to be done together. First, participants completed a Redcap survey¹⁴ with questions designed to populate the stories component. Participants had one week to complete their survey, which was then used by the research team to create custom and individualized versions of the prototype for each participant. A member of the research team met individually with each participant to review the personalized prototype and provided them with a unique password protected link to access their prototype. After interacting with their personalized prototype for one-week participants completed a final semi-structured 45–60-minute exit interview conducted virtually and video recorded via Zoom.¹⁵ The exit interviews focused on (1) participants’ impressions of the design of the prototype and (2) the impact of the prototype on participants’ reflection of their journeys. Youth participants were compensated with $145 of digital eGift Cards, and caregivers were compensated with $130 of digital eGift Cards for the entire study.

Analysis

All exit interviews were recorded and transcribed for analysis in MAXQDA 24.¹⁶ First, authors JB and AP developed an initial deductive codebook based on our research questions. We iteratively refined the codebook with the research team to account for emerging themes. Next, we did affinity diagramming^17,18 with coded quotes to group them into themes and ideas to support designing the tool.

Results

A total of 23 individuals (13 youth transplant recipients, and 10 caregivers) completed all study related procedures (see Table 1 for demographic information). In the following sections, we first present feedback on the prototype itself and then show how it facilitated meaningful reflections of their kidney transplant journey. All participant quotes are coded as youth (Y) or caregiver (C) participant followed by a unique number identifier:

Youth Kidney Transplant Patients (n = 13)	AGE RANGES IN YEARS 12 - 14 (n = 5) 15 - 17 (n = 5) 18 - 21 (n = 3)	GENDERS Man/Boy (n = 6, 46.2%), Woman/Girl (n = 5, 38.5%), Gender Fluid (n=1, 0.07%), and Nonbinary (n = 1, 0.07%)
Caregivers (n = 10), 2 did not report their ages	36 – 56 (median age = 46)	Woman (n = 9, 90.0%) Man (n = 1, 10.0%)

Design Impressions - My Kidney Journey Stories Component

Overall, almost all participants found value in the Kidney Journey Stories (KJS) component. When asked about including a form of the KJS component in a future tool, 12 out of 13 youth participants said they would include this component (with no changes or with minimal changes), and 8 out of 10 caregiver participants said they would include this component in a future tool. In the following sections, we share participant feedback on each of the four elements that make up the KJS component.

Kidney Journey Stories – Photo Element

As designed, the photo element allowed participants to have one photo per story, which inspired participants’ written stories. Youth participants were divided on whether they would include (n = 7) vs. not include (n = 6) the photo element compared to caregivers who resoundingly said they would include this element (n = 10) in a future version.

Youth participants did not feel strongly about including photos within the KJS component. Even though half of the youth participants said they would include this element, many did not elaborate on what they liked about it. One youth participant stated that the photos were “helpful” (Y15), while others thought it was “cool” to include (Y17). Moreover, Y07 and Y15 thought that the photos provided more context to their stories. Additionally, two youths expressed that they enjoyed the process of finding photos for their stories (Y09, Y12). Even though half of the youth participants stated that they would include the photo element, their overall excitement towards it indicates that they would not care either way if the element was removed in future versions of the component.

Youth participants who did explicitly state that they would not include this element in future versions of the component gave several compelling reasons why, such as not being a fan of seeing photos of themselves or taking photos in general (Y01, Y03). Furthermore, they found it difficult to find photos (Y02, Y14), they felt the photos were a reminder of difficult times (Y03), and in general, they didn’t think the photos “added much” to what was already there (Y02, Y06). One participant, Y16, did suggest making the photos element “optional”, supporting the notion that youth did not resonate with this element.

In contrast, caregivers did like the photos element. Caregivers liked how the photos accompanied their written stories, adding more context and personalization (C08, C09, C15, C17). Writing a story from a blank slate can be difficult to do, and having a photo for inspiration or alongside a written story can provide a different way for participants to connect to the moment they are writing about. Photos convey powerful messages, as C08 conveys, “…pictures are so powerful when you look at a picture and then what does it remind you of, and I think that that’s yeah, I thought that the connection between the picture and the story was really important.” Beyond using a photo as inspiration to connect or elaborate on a story, three caregivers also discussed how finding photos was an enjoyable reflective exercise (C15) as well as a conversation starter, “…so we open our photo library and we just we end up scrolling…we just talk about it with each other” (C11.1 and C11.2).

Two caregivers even stated a preference for having photos over their written stories (C01, C06). Others suggested being able to add multiple photos to a story (C11.1, C11.2, C12, C17), finding it difficult to select just one photo and having the ability to scroll between multiple photos (C11.1, C11.2). Another design feature suggestion from a caregiver was having a pop-up picture to remind them of specific memories (C01).

Kidney Journey Stories – Written Stories Element

As designed, participants reflected on three written stories (past, present, and future) with an accompanying story title for each story. Most youth (n = 12 out of 13) and caregiver (n = 8 out of 10) participants found value in their written stories.

Both youth and caregivers expressed how they enjoyed their stories, such as Y01 who stated, “I thought the stories part was definitely cool. How it was sharing the stories.” Some participants enjoyed both writing and reflecting on their stories (Y03, Y08, Y11, Y16, C08, C09, C11.1, C11.2 C12, and C16), while others preferred either the process of writing (Y02, Y07, C17) or the process of reflecting on their stories (Y06, Y09, Y14, Y15). A few youth participants told us that even though they enjoyed reflecting on their stories, they also found it difficult to write their stories. Although participants were divided amongst if they preferred writing or reflecting on their stories, most participants expressed finding value in having access to stories about their kidney transplant journeys.

Writing a story can be emotionally vulnerable, making it difficult for some participants to write and use their stories as a valuable tool of reflection. C08 told us about how difficult it was for her at first to write her stories, but ultimately, she found value in having them: “...When I went back to read them again, it’s a little bit less raw. When you first write them, I was writing it and it was just raw. It was emotions. And then when you take a step back, there’s gratefulness.” Many participants found value in reflecting on their journeys through their stories. Stories can be a powerful reflective tool for many reasons, including being a way for participants to compare their experiences over time. Y16 enjoyed being able to reflect on their experiences stating, “Yeah, it made me see how I was feeling like before transplant, then after transplant, and present day” (age 16). Stories can also be used as a tool in the future to reflect and learn from past experiences:

But I think I would keep the stories because even though they seemed at the time, I was like, “I’m not really sure”...having that information is nice, especially because I have so little…I’m probably not going to have a written account of how I was feeling at this time ever again...I think I’ll appreciate them more in the future. – Y12 (age 21)

A few youth participants liked being able to tell their own stories: “I got to tell it from my perspective” Y11 (age 12). Stories can be an effective way for youth to express themselves, reminding them that their values, feelings, and thoughts matter, inherently promoting self-efficacy. Participants also found value in their stories to see the “big” picture of their journey and to feel positive about the future.

Not all the participants found value in having their written stories to reflect on. Two caregiver participants (C01, C06) understood how stories can be valuable for individuals but personally did not think the written stories were helpful for them. Some participants enjoyed the process of writing and others did not, suggesting room for improvement in capturing participants’ written stories. Moreover, results for this element suggest that participants find value in having stories, but there is still room to improve on how information from written stories is applicable to individuals and can provide them with actionable insights.

Kidney Journey Stories – Kidney Journey (KJ) Visualizer

As designed, the KJ Visualizer was intended to provide a snapshot of five dimensions that youth kidney transplant patients experience throughout their journeys³. All youth participants (n = 12) besides one stated that they would include this element in a future version of the Kidney Journey stories component, while only 7 out of 10 caregiver participants would include the KJ Visualizer.

The KJ Visualizer was well-received by youth participants who liked the “good design” (Y01, age 16). Youth participants felt that the KJ Visualizer’s simple visual design helped them understand the five dimensions presented to them more easily. Furthermore, youth and caregiver participants spoke about how the KJ Visualizer helped them to identify change over time for each of the five dimensions. For example, Y17 (age 13) liked that she was able to identify changes in her confidence over time, “I liked the confidence part, like thinking about how confident you are with sharing it...If you know how confident you are with that, it’s easier.” The design of the KJ Visualizer was intended to be a way for participants to compare themselves over time across each of the five dimensions. Y03 (age 13) talked about how they liked being able to “see where they are at with something,” and C06 liked seeing how the “scale” changed. In comparing each of their five dimensions over time, participants were able to identify change and actionable insights, such as Y12 (age 21), “…I liked the slider bars a lot, and I think it definitely helped me realize that I had strengths and I had some weaknesses, and it really helped me reflect on the weaknesses and how to get better at them.” Y12 was particularly enthusiastic about the KJ Visualizer, also stating:

And I liked the bars, the scale. I think that was nice. And I liked the prompts between the bars. I thought they were really good and interesting and an interesting way to frame [My Kidney] Journey because I’m not sure I would think about hiding versus self-expression. But then I was like, “Oh, I definitely was not telling anyone,” versus now where I’m like, “Yeah, I have a kidney transplant.” So I liked the bars for sure. And I think I liked the framing of future, present, and past. I think that’s cool. – Y12 (age 21)

In contrast, some caregiver participants disliked the KJ Visualizer (C01, C08, and C09), because they found it to be confusing or they felt that it did not add much additional meaning to them. C01 expressed that they felt the dimensions weren’t as applicable to them now but that it “might be interesting to do as a quarterly check-in,” indicating it could be valuable for personal benchmarking depending on the required frequency of filling it out. Interestingly, C01 also discussed how, for a “kid who is managing on their own,” it might be a good way to chart growth and feeling. C15 suggested modifying the KJ Visualizer, by having colors indicate the positive and negative aspects of a dimension.

In summary, the KJ Visualizer successfully provided youth kidney transplant patients with an intuitive way to assess and reflect on changes across five key dimensions over time, receiving strong positive feedback for its clear design and visual simplicity. While most youth participants valued the visualizer’s insights into personal growth and confidence, caregiver reactions were more mixed, with some finding it less meaningful or recommending modifications to enhance clarity and usefulness for periodic self-assessment.

Kidney Journey Stories – Story Categories

As designed, this element was intended to give participants a way to categorize their stories. 12 youth and seven caregiver participants stated that they found value in having story categories, stating that they found the categories “helpful” and “interesting.” Having the story categories visually laid out below their stories supported participants, like Y11 (age 12), to “know the theme of the story” without having to read their full story. Moreover, some participants expressed that the story categories helped to give them additional context for the other elements of the prototype.

Participants were able to select as many categories as they wanted for each of their stories, with most participants selecting more than one category. However, some participants found it difficult to fit their stories into a category(ies) (C01, C06, Y07). Participants were not given definitions for the different story categories, perhaps contributing to their confusion about which story categories to select. Y07 (age 16) additionally expressed that she felt the stories “spoke for themselves”, suggesting that the categories did not provide her with meaningful insight.

Even though this element was overall well received by participants, our findings indicate that participants did not gain as much insight from this element compared to some of the other components. A few participants (Y07, Y12, and C12) suggested that the story categories could be better utilized as inspiration to help participants write their stories.

Participants Reflections

Our findings show that most participants enjoyed using the My Kidney TREK protype, as it helped them to reflect and gain insight into their kidney transplant journey. Next, we present the insights our participants described after using the prototype, highlighting four reflection themes from participants: (1) positive reflections on their overall journey, (2) their personal growth, (3) negative experiences and previously unrecognized barriers, and (4) their future.

Positive Reflections on their Overall Journey

Many participants (Y07, Y11, Y12, Y16, Y17, C08, C09, C12, C15, C17) described feeling proud when reflecting back on their journey, which facilitated their overall confidence and a desire to maintain their progress. Participants described how the prototype helped them see progress in self-management skills, maintaining “good” kidney health, working towards personal life goals, and becoming independent. For example, Y11 (age 12), who spoke about how she doesn’t “need as many reminders,” and this lets her know she is “more independent.” Similarly, Y17 (age 13) spoke about how reflecting on her kidney function showed her progress in her self-management and confidence, “Well, I mean, I know how to take care of myself better and looking at all the things that…I’m pretty confident in myself.” Ultimately, for many participants, the prototype allowed them to build confidence in their own (Y07, Y11, Y12) or their child’s (C06, C08, C15, C16, C17) abilities/independence, a key skill as youth mature into young adults.

Connecting participant’s past, present, and futures helped several youths (Y01, Y02, Y08, Y11, Y12, Y14, Y15, Y16, Y17, Y18) to reflect on their entire journey, gaining a bigger picture about the impact of their transplant. Viewing their journey helped participants to positively reflect on their perseverance over time as well as expressing gratitude for their current state of the journey. As their chronic illness becomes a part of their everyday lives, youth and their families may put their past behind them, but in reflecting on their journeys, our participants were able to positively reflect on their past, connect to their present, and feel excited about their future.

Reflections on Personal Growth

For many participants, the prototype provided an opportunity to reflect on successes and challenges in managing their health, highlighting improvements in self-management skills and overall independence. For example, participants described becoming more consistent in taking medications, drinking water daily, and independently refilling prescriptions. As youth recognized progress in their abilities to take on additional responsibilities and manage required health care tasks independently, their self-efficacy (belief in their own ability to self-manage) increased, fostering greater confidence in their self-management.

Developing a routine is essential for youth who are managing their medications with their family’s help or on their own. Y02, Y06, C16, and C17 reflected on growth in developing their routines, which are subject to change as youth and their families go through different seasons of life. In interacting with the prototype, participants could reflect on and identify areas of self-management growth and change they have had throughout the transplant journey. Reflecting on all components of their journey can help youth identify barriers to successful engagement, identify growth in their self-management, and develop a stronger sense of self-efficacy.

Reflections on Negative Experiences and Barriers

In going through something as eventful as a kidney transplant, it is expected that youth and their caregivers will experience difficulties at some point along their journey. In reflecting on their journeys after using the prototype, several participants (Y02, C09, C16) told us about negative experiences and barriers that they have been through. Our caregiver participants reflected on the difficulties of past medical experiences, such as complications experienced post-transplant (C09). Additionally, in reflecting on their family’s journey, caregivers reflected on difficulties with medication management, making lifestyle changes, planning ahead, and deviating from routine. Even though reflecting on negative experiences or barriers can be emotionally taxing for individuals, it can also be a cathartic output and a way to learn from past experiences. We expected that the My Kidney TREK may cause participants to reflect on difficult past experiences in addition to positive reflections, since transplant journeys are not linear and are filled with many moments of fear and worry. It is valuable for participants to identify challenging times, which may provide insight into the need to ask for help or support.

Future Reflections

Participants were asked if they were more excited or nervous about their futures, and most participants felt excited about their futures after interacting with the prototype, but some participants still expressed nervousness about their futures. Two caregivers (C06, C09) and one youth (Y09) expressed being nervous about youth’s capabilities or future independence. It is normal for youth and caregivers to express worries about their future capabilities, especially if some of those worries stem from not feeling confident in where they are in the present. Using information presented to them from their prototype, participants could reflect on their present and future worries and then use their reflections as a catalyst to start conversations with caregivers or clinicians about what they could do now to feel less worried about the future.

Others expressed being nervous about the future in general or being hopeful but cautious due to their past experiences. For example, Y02 (age 18) stated the following about being cautiously hopeful, “A little bit of both. I’m excited because after the transplant, my health is better, and I’m hopeful to do more stuff and activities. Nervous because it could go completely in the opposite way and there’s really no way to know what’s going to happen. So, I’m just trying my best to do stuff that’s within my control so that it would go to the way I want it.” Participants feeling cautiously hopeful aligns with having chronic kidney disease because, due to their illness, they will most likely need to have another transplant in their lifetime, as C17 articulates:

“I think it actually made me a little bit more…not necessarily nervous, but it did make me realize that her stages are already progressing and so this will be an ongoing journey. In the back of my mind, I think I always knew that, but it just really puts it point blank that it is an ongoing journey, which is a good thing” – C17

Many worries about the future stem from individuals feeling like they have less control, unsure about missing information, or dissatisfied with their current health and how it impacts their ability to meaningfully participate in life’s activities. After interacting with the prototype, participants positively reflected on several of these aspects, potentially contributing to why many of the participants expressed excitement about their futures.

A few caregiver and youth participants conveyed being excited about the current phase of their journey they are in right now (C09, C11.1, C11.2, C15, Y15) because they feel like they are past some of the more difficult moments and are happy with their current health and life. Others, after reflecting on their journeys, were excited/confident about their future capabilities and independence (C01, C06, C11.1, C11.2, C12, C15, C16, Y17). Caregivers expressed excitement about their child’s future independence because they felt more confident after reflecting on their child’s self-management growth. Similarly, some youth participants expressed feeling more positive about their futures, as conveyed by Y07 (age 16):

I guess I just have a lot of life before me. And like I said, the stories helped me reflect a lot. Because sometimes, it’s easy to get discouraged with the transplant that, “Oh, my health is not good. I’m not going to be able to do a lot in the future.” But the stories just helped me to, just kind of encouraged me for the possibilities in the future. – Y07

Managing a chronic illness throughout childhood understandably creates anxiety for youth transplant patients as they consider their futures. Despite these additional challenges, youth still need to actively prioritize their own dreams and aspirations. By aligning their future goals with their present lives, they can recognize areas needing change, address misalignments, and feel more excited and optimistic about the future.

Discussion

The journey for youth living with ESKD is filled with highs and lows, and for most, receiving a lifesaving kidney transplant provides new opportunities and hope. Yet, receiving a kidney transplant as an adolescent or young adult comes during a period of great transition, where youth are learning to become independent and take increasingly more responsibility for managing their health. Success requires that individuals develop strong self-management skills, a result of having agency and self-efficacy, both of which come from reflecting on their journey. Our results highlight storytelling as a powerful tool that facilitates reflection, encourages goal-setting, and helps youth develop the essential skills to successfully manage their health. Our findings provide the foundation for developing technology to support youth living with a chronic illness, such as ESKD.

Stories offer rich and meaningful information within healthcare contexts and form the basis of narrative medicine, a recognized domain dedicated to bridging communication between patients and clinicians through patient-centered storytelling^4,20. Recognizing this value, we designed the Kidney Journey Stories component to help youth kidney transplant recipients, an at-risk population. Our findings highlight the value of storytelling to empower youth kidney transplant recipients. In the following sections we discuss how our results can be used to guide future work and provide a series of design recommendations. Each element included within our prototype (photos, stories, Kidney Journey Visualizer, and categories) provided our participants with valuable information, but our findings indicate there are opportunities for improvement. Therefore, we provide the following three design recommendations to not only make it easier to capture stories but also increase the value the stories provide: (1) support multiple modalities to capture stories, (2) utilize prompts to stimulate stories, and (3) create features to extract more actionable insights and reflections from individual stories.

Support Multiple Modalities to Capture Stories

The barrier to writing can be difficult for individuals, so providing patients with alternative options to capture and view their stories may be beneficial in future designs. Stories can be captured via a variety of mediums, including written text, audio recordings, and visual formats (e.g. photos or drawings). Prior work has demonstrated the success of using video and/or audio recording to capture individuals’ health stories as digital storytelling^21–24. In addition, greater use of health vlogging, where individuals use video to share their personal health experiences and insights to others, further demonstrates the power of storytelling through video^25–27. Further exploration into the feasibility and challenges of capturing video and audio recordings will need to be considered before integrating it within future tools, but there may be benefits to giving participants the option to capture their stories in these alternative mediums.

In previous work, we and others found that youth found value in using photographs to tell their stories and therefore hypothesized that it would provide adequate motivation to guide storytelling in the stories prototype^12,28–31. Surprisingly, our youth participants had mixed feelings about photos, while caregivers seemed more enthusiastic. Therefore, future tools should provide an option for individuals to decide whether they want to include photos. To encourage the use of photos or to keep them engaged with their photos, incorporating additional features that support personalization may provide value, as suggested by several caregiver participants: (a) a pop-up photo memory feature (supports reflection), (b) incorporate a favorite song that goes along with individuals’ photos and stories (adds personalization), (c) a photo carousel for multiple photos (supports reflection and ease of viewing photos), and (d) ability to source photos from other places (e.g., Google Images) (ease of adding non-personal photos). These ideas may help future users by supporting reflection, adding personalization, and making it easier for participants to view and add photos.

Utilize Prompts to Stimulate Stories

To better facilitate storytelling, asking guiding questions through prompting may lower the burden associated with generating meaningful stories and ultimately allow for individuals to extract more actionable insights from their stories. In previous work we leveraged the Kidney Journey framework to prompt storytelling for the purpose of reflection and building self-efficacy⁶. However, the framework was not utilized for this purpose in the prototype, which was a missed opportunity. Given the value our participants found from viewing the Kidney Journey Visualizer and how their Kidney Journey state changed over time, adapting it as a story elicitation tool should be explored in future work. For example, asking youth to first specify their Kidney Journey state using the Kidney Journey Visualizer, and then tell a story explaining their choice. Another opportunity for prompting stories could come from redesigning the stories categories element. In our prototype, categories were used as a tagging or classification feature only, applied after the participants wrote their stories. Instead, future tools may present individuals with a list of relevant topics (e.g. mastering my meds, what keeps me up at night, etc.), to prompt them to tell a relevant story. Lastly, leveraging proven narrative elicitation protocols such as the CAHPS Patient Narrative Item Sets32 - which include sets of open-ended questions designed to prompt individual storytelling about one’s healthcare experiences – may be able to provide valuable insights³³. Ultimately, prompting may lower the burden of storytelling, and ensure stories have the structure to support meaningful reflections.

Create Features to Extract more Actionable Insights and Reflections

Our work underscores the value of storytelling in supporting self-management skills among adolescents and young adults (AYA) as they transition toward greater independence. Developing these skills requires youth to build confidence and self-efficacy in their ability to manage their health successfully. The Kidney Journey Visualizer supported this process by allowing participants to reflect on their progress through comparisons of their Kidney Journey states over time. While participants found this component useful, we believe its capacity to generate more meaningful insights could be enhanced. In previous work, we demonstrated that youth navigate both positive and negative shifts across the five dimensions of the Kidney Journey framework during their transplant journeys, with the aim of progressing toward the more desirable end of each continuum3. For instance, in the domain of transitional management (family-managed vs. self-managed care), the goal is typically increased self-management. Incorporating visual indicators, such as color, an idea proposed by C15, may strengthen this feature. Using green to denote the positive end of a dimension and red for the negative end, could leverage well-established symbolic associations to help guide patients in recognizing areas for growth and focus. Lastly, while the Kidney Journey framework was designed for both youth and caregivers, it may be better suited for youth, given their need to gain meaningful insights through reflection.

To further identify actionable insights, youth kidney transplant recipients may benefit by learning from their peers. Yet, due to a variety of barriers such as ensuring the privacy of protected health information and the low prevalence of pediatric ESKD, it remains very difficult for youth to learn from each other’s experiences. While prior work has demonstrated the value of peer mentoring³⁴ and peer support^35–37, further work is needed to understand how peer-support can facilitate self-management skills. Our prototype was designed as a personal tool to support individual reflection through one’s one journey, but its value could be amplified by allowing peer comparisons (i.e. benchmarking). For example, systematically collecting youth transplant recipients’ Kidney Journey state at pre-determined intervals before and after transplant, along with their relevant stories, would create a powerful reference to support comparisons. A future tool could allow individuals to first capture their own Kidney Journey state and then compare it to an average Kidney Journey state of selected peers, based on criteria they identify as meaningful (e.g. time since transplant, age, preferred hobbies, etc.). However, developing such a benchmarking tool requires a deep understanding of the risks and benefits of social comparison theory^38,39 to minimize negative outcomes.

Lastly, in addition to structured comparisons, youth may benefit from simply reading stories shared by their peers. Introducing a categorization system, using the Kidney Journey dimensions as labels, could help organize these narratives and make them more accessible. For example, if a patient tags multiple stories under “Responsibility and Planning for the Future,” others navigating similar challenges could easily find and learn from those experiences. A future version of the Kidney Journey Stories tool could incorporate this feature, allowing users to browse and engage with peer stories most relevant to their journey. Haldar et al. demonstrated the value of such a system in their Patient Advice System, which enabled users to locate meaningful content more easily within an online health community40. Without structured support, patients often struggle to find relevant information in online environments41, underscoring the importance of thoughtful categorization to enhance usability and engagement. Implementing this approach could foster deeper connection, reflection, and support among youth navigating transplant care.

Limitations and Future Work

This study has several limitations to consider. Participants were recruited from a single pediatric hospital in the Pacific Northwest, and thus the demographic and geographic characteristics of the sample may not reflect the broader population of youth with kidney transplants. Additionally, our recruitment strategy targeted youths between the ages of 12 and 21 who had reliable access to internet-connected technology, potentially excluding those with limited digital access. The participants represented those who were relatively stable, with no individuals experiencing end-stage kidney disease at the time of the study, which may have influenced the types of insights shared. Lastly, those who chose to participate may have been more engaged in their care, introducing a selection bias that may not fully capture the experiences of less engaged or more medically complex patients.

Future research should explore the generalizability of this work with broader populations, including youth managing other chronic illnesses, to better understand how storytelling and visual self-reflection tools like the Kidney Journey framework could support self-management across different contexts. Additionally, future work should focus on developing the My Kidney TREK prototype to integrate into clinical care. This version would aim to serve as a structured intervention to support self-management and independence, potentially improving clinical outcomes. Features such as the ability to compare one’s journey to anonymized peer data, through benchmarking or shared story repositories, may help patients gain a deeper understanding of their own progress and foster a stronger sense of connection and motivation.

Conclusion

This study highlights the potential of storytelling and visual tools like the Kidney Journey framework to support self-reflection, build self-efficacy, and strengthen self-management skills among adolescents and young adults with kidney transplants. By centering the voices and lived experiences of youth, we identified meaningful ways to engage them in understanding their own health journeys while also surfacing opportunities for improving digital tools to better support their needs. Integrating these tools into clinical settings and expanding their application to youth with other chronic illnesses may create more personalized, empowering, and effective strategies for promoting long-term health and independence