Approach

To obtain more detailed feedback about the intervention in the KidneyTIME study, we conducted semi-structured phone interviews with KT-seekers randomized to the intervention arm between April 19, 2022 and December 8, 2023, and we collected participant comments to an open-ended survey question ‘Please provide us with any comments about the program that you would like to share.’ This study was approved by the University at Buffalo Human Research Institutional Review Board. The trial was also registered on ClinicalTrials.gov (#NCT05154773).

Setting

This qualitative descriptive study took place at Erie County Medical Center (ECMC) in Buffalo, New York, a mixed urban-suburban city with a median household income of $48,904 and racial composition consisting of 44.3% non-Hispanic White, 34% Black, 12.1% Hispanic, and 9% Asian.

Sampling

To be eligible for the original trial, patients must be referred to ECMC for a kidney transplant, English-speaking, age ≥ 18 years, have email or text access, and provide electronic consent. A total of 422 patients enrolled and 212 entered the intervention arm to receive the intervention and time-based surveys if they remained active in the study (i.e., eligible to receive a kidney transplant according to the transplant center selection committee). For the current study, we sought to obtain feedback from participants about their experience with the mobile program. We purposively recruited participants for interviews who were assigned to the intervention group and had completed the 12-month follow-up. We collected open-ended comments from intervention participants who completed a 1-, 6-, or 12-month survey and whose electronic data indicated they viewed at least one video on the interactive site.

Intervention

The intervention components (educational videos, web-interface, messages) were built to maximize accessibility for people with low literacy, low vision, and small devices [4,6,8,9] and are summarized in Table 1 with examples provided in Fig 1. The program content included kidney transplant and donation education targeted to potential recipients and donors within 25 animated educational videos, each 2–3 minutes long, specifically: 12 videos that describe the live kidney donation process, benefits, and risks, 1 video about transplant-process caregiving and donor search advocacy, 11 videos that describe kidney transplant process, benefits and risks, and 2 videos covering deceased-donor kidney allocation and the Kidney Donor Profile Index as alternatives to LDKT. The educational content implicitly includes caregivers and supportive others by showing their roles in all aspects of the transplant and donation process. All content and messaging within the study were written using clear communication strategies at or below an 8^th grade Flesh-Kincaid reading level by the research team, including experts in health communication, medical anthropology, clinical transplantation, and lived experience with kidney disease, donation, and caregiving.

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Table 1. Components of the KidneyTIME intervention.

https://doi.org/10.1371/journal.pone.0325313.t001

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Fig 1. Intervention demonstration pages.

https://doi.org/10.1371/journal.pone.0325313.g001

As shown in Fig 2, patients in the intervention arm were sent a personalized link to open the web-based intervention via email or text without requiring log in. Intervention delivery included core education as a single 13-minute video emphasizing live donation (a collage of 6 videos), a study webpage and public website hosting the full video curriculum with more kidney transplant/donation information, and resource awareness messages with links to access the intervention videos (use-reminders). The videos were vertically listed behind 4 concept buttons requiring 3 clicks to access. Each video was activated for sharing using ubiquitous technologies (email, text, social media). The use-reminders, sent via email or text every 3 weeks for a year, evenly covered transplant and donation topics.

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Fig 2. Study design.

https://doi.org/10.1371/journal.pone.0325313.g002

Information collection

Patients who completed a final survey at 12 months (April 2023 and August 2024) received a question to assess interest in participating in a discussion about their experience in the study (n = 56). Those who responded affirmatively (n = 42) were provided an electronic consent form and after electronic signature followed up with a phone call a day later to describe the interview and confirm participation. Trained members of the research team (SP, CH) interviewed consented participants (n = 31) by telephone. Verbal consent to audio-record was confirmed. They used a semi-structured interview guide (Fig 3) to facilitate discussion and standardize data collection. The interview guide was developed based on the intervention components and expert opinion and piloted with several content experts, including our patient and stakeholder advisory committee members, to ensure clarity and appropriate length. The interview guide asked questions about the patient’s activities and experience with the online program, video shareability as the social network outreach enablement, program use-reminders, and related challenges and opportunities for improvement. Patients received a debit card for $25 after each completed survey and the interview to compensate for their time.

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Fig 3. Interview guide*.

https://doi.org/10.1371/journal.pone.0325313.g003

Data collection and analysis

Of 122 participants who used the interactive site, 36 provided comments about the program at the end of a survey. Of 43 participants who completed the 12-month survey and expressed interest in an interview, 31 participants were interviewed. There were 56 unique participants since 11 patients contributed to both interviews and comments. The interviews lasted between 9 and 38 minutes and were recorded and transcribed. Transcripts and comments were independently read by the research team members (all white females), an anthropologist, two social scientists, and a transplant surgeon who developed an initial coding scheme. Analysis was both deductive, informed by the research objectives and interview and survey questions, and inductive, arising from multiple readings and interpretations of the responses [10]. The transcripts were imported into Dedoose (9.2.12) where one author, a doctoral-level social scientist, systematically coded each participants’ statements first deductively, by question topic, and then inductively into sub-concepts within those organizational categories. A second author, an anthropologist, reviewed the codes, reached consensus on any differences, and confirmed a final set of codes and subcodes. Reports were generated on categories (codes and sub-codes) within broad concepts of interest using general inductive approach [10,11]. While we did count code occurrence, emphasis was placed on range of responses and experiences, rather than occurrence frequency. The study team discussed the code reports, identified connections between them and derived cross-cutting concepts [10]. Participants were not involved in the analysis process or in confirming the accuracy of the transcripts and findings to avoid further burden of research. We also used descriptive statistics to report socio-demographics of participants from the intervention arm and the sub-study, showing clear representation of the wider population (Table 2).

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Table 2. Baseline characteristics*.

https://doi.org/10.1371/journal.pone.0325313.t002

Patient characteristics

Of the 56 unique patients who completed interviews or provided a survey comment, 54% were female, 54% were non-Hispanic white, 58% did not have a college degree, and 46% reported a total annual household income ≤ $30,000 at the time of the interview (Table 2). At enrollment, one-half of them were in the referral stage of evaluation. Study delivery was via email in 54% and text in 46%. As summarized in Fig 4, the codes aggregated into 9 concepts and 32 sub-concepts related to patient engagement and experience with the online program. Exemplar comments for each concept and sub-concept are provided in Table 3 and are summarized below.

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Table 3. Representative quotes of concepts and sub-concepts of patients’ attitudes about the mobile program as well as suggestions for improvement.

https://doi.org/10.1371/journal.pone.0325313.t003

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Fig 4. Summary of intervention features, concepts and sub-concepts of patient experience and engagement with the program.

https://doi.org/10.1371/journal.pone.0325313.g004

1. (1). Access to video sites. Participants in general found it easy to access the webpage through links sent by email or text. Many respondents accessed the link through a saved email. Some mentioned that it was stored in their browser. None indicated that they typed in the URL for the website.
2. (2). Devices used. Nearly all interview respondents indicated they accessed the videos from their phone (n = 25). This was either due to convenience or because that was the only device they had. Seven also mentioned they used their computer, often for a larger picture. Phones were reported as being more “convenient,” “faster,” and “reliable.”
3. (3). Timing of use. Patients generally emphasized the convenience of on-demand access. Most used the online program early after receiving access to it. A few used it more later in the study when they had time to “take in the information.” Times that they viewed the program were “after the kids went to bed,” waiting at “doctor’s appointments,” “during dialysis,” and at the “bus stop.” Two patients would have liked availability of the program when they “first started” the transplant process.
4. (4). Receiving use reminders. Nearly all participants reported that the number of reminders was appropriate or sufficient and that they were very helpful. The reminders helped them remember the resource and prompted watching. Most recalled getting reminders between once a month and twice a month. Some saved the reminders for later viewing. One participant indicated that the reminders made them feel cared for by the transplant team. Another thought a few more reminders would be good. Others cautioned against doing too many reminders (it would inundate their email or make them feel pressured).
5. (5). Viewing videos. In terms of program functionality, patients found the site to be well structured and simple to use by clicking on videos of choice. Many patients reported viewing all the videos, usually in a row, whereas others viewed a few at a time. Some mentioned re-watching videos and visiting the site multiple times. Reasons reported for re-watching included “refresher/make sure didn’t miss anything,” “in case someone wants to talk about it,” because they weren’t sure “if they watched them yet” (confusion with the technology), and because they (erroneously) thought they would receive compensation for viewing. The information in the videos generally helped them understand the kidney transplant process; they were particularly focused on videos related to the living donation process and transplant recovery. Some reported that the video information made them able to talk more confidently with others about kidney transplantation. One reported that the information alleviated shame about their condition. The majority stated that the videos confirmed what they were already thinking regarding living donation, either already interested or not interested. Non-interest was generally due to concern for donor health or perceived unavailability of donors. Some stated that the videos changed their mindset and actions towards living donation. Patients mentioned starting to think about donors, feeling more comfortable asking and explaining, learning different strategies for finding donors, and doing more outreach behaviors. Information considered important to discuss with potential donors was “they can live a full life after,” “you don’t have to pay out of pocket,” and “my insurance would help cover.”
6. (6). Sharing videos. Nineteen interviewees said they shared the videos in some way, while 12 did not share the videos. Regarding how they shared them, participants responded that they shared them in-person, via email or text, and sometimes social media. Participants said they would often watch the videos together with family or others on their phone while sitting side by side at a table, on the couch, or the edge of a bed. When they shared via email or text, they copied and pasted the link into a text, forwarded the email, or sometimes used the share button feature on the site. They often shared the link to the whole library of videos. A few participants shared the videos on social media—mostly Facebook, but also Instagram and WhatsApp. Two respondents intend to post on social media but had not yet at the time of the interview. Some mentioned needing technology support from their children to share the videos. Respondents mostly shared the videos with family and people close to them and less often in their wider social network. Respondents often indicated why they shared them; the most common reason was to help their loved ones understand the process. A couple of respondents also indicated it was a way to elicit possible donors.
7. (7). Response to sharing. In line with the participants’ intentions for sharing the videos, participants said that their friends and/or family were “happy for the information,” found it “informative” and “good” and that it answered questions and “made it clear to them what exactly was going on with me.” A couple of participants described their family as more at ease after watching the videos. Four respondents talked about how their family or friends asked what they could do to help, offered to get tested, began researching the donor surgery process, and looked into the kidney exchange program. Several indicated that there had been little or no response to the shared videos. In one situation, the video likely reinforced information that the family member already had received.
8. (8). Not sharing videos. More than a third of the respondents reported not sharing the videos with others. Reasons included “already shared the information in conversation,” “no one to share them with,” “no one has asked,” “health is personal,” “didn’t want to impose,” “not ready yet,” and “didn’t know how.” The most common responses were that health is personal and they didn’t want to impose. These responses, along with not being ready yet, alluded to the uncertainty about eligibility for a transplant, which was explicitly stated by a couple of respondents who were waiting to hear if they would be put on the waiting list or felt they had time because they were not yet on dialysis. One participant expressed that people have their own issues going on and they don’t want to add to them. They may have been more likely to share their needs if they were younger, but given that their network is all older, they don’t want to add to their many problems. Some said they weren’t ready to share yet, implying that eventually they may be willing to share with others, perhaps when their eligibility is clearer or there is greater urgency.
9. (9). Participant recommendations. Participants shared recommendations related to the intervention, the care team, and the need to increase awareness and communication about kidney transplantation. Many respondents mentioned specific modifications to the video content or length. Specific content suggestions included: more information on the financial considerations and funding support (including health insurance), specific information about donation (finding a donor), caregiving, transplantation (more on medications), and dialysis, include negatives – like how much pain you will experience, and adjust video length (too short, too long). Participants also had suggestions related the features of the current intervention – make the videos easier to share and emphasize sharing more, provide sharing instructions, have a link to a live chat or a number to call with questions, create a search option, create links to other regional supports and resources, and ensure that the videos that have already been watched are clearly marked. Some respondents stated that the videos were great and that ‘they just needed to get them out there’ – through social media, billboards, in person sessions at dialysis centers, and in newspapers. Participants also suggested modifications to the care team behaviors, including checking in with the patient more frequently, providing more support in finding a donor, and making the videos mandatory for being added to the transplant list.

Program utility and unmet needs

The KidneyTIME program could be opened through unique links sent via email or text and was reported to be easy to access. It did not require logging-in, entering time-consuming data fields, or downloading an app. This approach was based on our previous research that found that requiring log on was a barrier to use in 16% of the population referred to our transplant center [17]. To ensure access, a URL to a publicly available version of the site was promoted at the end of each video, but participants did not mention using it or knowing of its availability. Some participants recommended dissemination of the intervention from their provider. As such, the URL may become more useful later for post-trial clinical integration of the intervention into the real clinic; however, new strategies will be needed to enable staff to disseminate the URL and motivate uptake of the resource by individuals.

In terms of using the site, participants liked the convenience of on-demand availability, and most felt the site was well structured, simple to use, and helpful. Patients generally liked using their phone to access the online program; however, some preferred a larger screen. Accessing LDKT education through phones may be important to ensure broad reach since patients with less education, lower incomes, and racially or ethnically minoritized patients have lower access to computers [16,18] and the fastest increases in cell phone adoption [19]. Some participants requested more features, such as a search option, and the opportunity to stop at any moment and proceed at a later time without information about earlier viewing being lost, such as through a downloadable app. Findings reinforce that future modifications of the intervention should maintain the simple hierarchy of the original site structure. Future requirements to log in would allow past viewing activity to be saved, but may be a barrier to access.

The video content was considered helpful for learning and reducing anxiety about kidney transplantation and donation, both among patients and their sharees. The most popular topics were about living kidney donation and transplant recovery; these qualitative findings are corroborated by electronic video viewing data (reported elsewhere) which showed that the top three most viewed videos were on the basics of living kidney donation, complications of living kidney donation, and recovery after transplantation [7]. For some, the content increased interest in living donor kidney transplantation, comfort and motivation in asking for donation, as well as doing other donor search actions. Several wanted more topics or detail. Some would have liked information reinforcement, such as through post-video questions and answers; personalization, such as the ability to ask questions; or video recommendations tailored to their informational needs.

Although most accessed the program immediately, a few participants expressed use challenges, citing timing, forgetting, and lack of availability (poor health) as reasons why they were unable to use the system when it was first sent to them. The reminder messages helped to overcome forgetting and prompted usage, especially when the message highlighted previously unseen videos. These findings are consistent with digital usage data showing that 48% of users opened the webpage in the first month of intervention webpage access. At 6-months follow-up (whereby participants had received 8 reminders), intervention usage increased to 74% [7]. In line with engagement research [20], the electronic reminder messages were designed to stand out and to make them generally relevant (to KT-seekers) and persuasive by describing what a person might gain by viewing or sharing the content. We were mindful of not burdening respondents with too frequent reminders. As there are no data in the literature on digital use messages to guide the correct dose in the kidney population, we relied on our community partner’s advice prior to the intervention to set the dose of 17 total messages over 1 year. Patients reported that the number of messages was sufficient or could have been more frequent and made them feel we cared. Only 3% (6/195) of intervention participants opted to stop receiving electronic messages, suggesting that message fatigue was not an issue.

Patients reported that the option of video sharing was useful, as it enabled them to easily disseminate education to others, sometimes without having to explain it themselves. Most shared videos to close contacts and in person (side-by-side), rather than asynchronously. Trial data corroborates that 52% shared the intervention in the first 6 months [7]. The videos were shared to put others at ease, prepare them, and elicit possible donors. People’s responses to the shared videos generally included feeling happy for the information and interested in helping. Several, however, indicated that they had little to no response after sharing the videos. Limited sharing was sometimes reported due to not being willing or ready to find a donor, not wanting to impose on others, or not knowing how to share. Some patients requested instructions for sharing videos and greater emphasis on sharing in messaging. We attempted to make the site functionality intuitive; however, some participants could have benefitted from sharing instructions or assistance. Although video shareability enabled patients to disseminate LDKT information, the heterogeneity in sharing behaviors shows that there is room for improvement. To further promote intervention usage and donor search, additional components of the intervention may be needed to lower the barriers for patients to engage in the desired action (bumper sticker, t-shirt) or further enabled by providing human facilitation, such as mobilizing caregivers, involving navigators or leveraging provider encouragement to take the action.

Comparison to prior studies

Other kidney transplant access interventions that provided digital tools for participant-directed use have provided websites [13,16], tablet computers [14], and mobile or social media apps [12,15]. Participant experience using the provided digital tools is sparsely reported. After viewing a multimedia website at the transplant center, 33% of participants viewed it after returning home with nearly half viewing it together with others [16]. Based on a 3-week follow-up telephone survey, participants expressed positive attitudes about the use of the website (in terms of understandability, ease of use, plan to revisit, and would recommend to other patients and friends/family) [16]. The most popular sections were about living donors and financial issues. A study that gave participants the option of downloading a mobile app containing animated videos and a risk calculator did not detail participants experience or extent of usage [12]. A study that mailed tablet computers to participants homes reported connection issues and usability barriers and 70% viewed the study videos on the tablet [14]. In a Facebook app study for posting personal stories and sharing links, only 17% of participants allowed the researchers to view their postings, so the extent of intervention uptake is unknown [15]. The KidneyTIME intervention made use of participants’ own devices and email/text messaging to provide web-based smartphone-optimized content. Based on a prior quantitative study [7] and the current qualitative study of intervention usage by participants several insights can be drawn. Interventions using email or text messages are low burden in that receiving intervention messages requires no user effort and allows patients flexibility to participate through their phones on their own time. Design techniques to encourage revisiting may include not requiring logging in or downloading an app. Use of automated messages to prompt intervention usage may have additional benefit to prevent ‘forgetting’. In terms of reach, intervention uptake data previously found similar rates of visiting the intervention by disadvantaged populations [7], suggesting that it is useful for dissemination to these populations.

Limitations

This study has several limitations. The study was conducted at a single institution and only among English-speaking adult patients referred to a transplant center with email or text access who were predominantly Black or White race; therefore, the results may not be transferable to other settings, contexts, or populations. We restricted the interviews to patients in the intervention group, who had completed the 12-month follow-up survey. This sampling method excludes patients who had low engagement. We wanted to focus on those who had been most engaged in the study in order to get more detailed feedback about the intervention that would be helpful for future improvements.