3.1 Social Media and the Adolescent Transplant Patient

There are multiple ways in which social media can intersect with the adolescent transplant patient, often in ways that align with adolescent's developmental stages. The first area is around identity development, a normal and crucial part of adolescence [16]. Social media provides opportunities to share aspects of a teen's identity through multimedia including text, photos, and videos. For some adolescents, social media can be a venue to share information about their ongoing illness and integrate that experience into their identity. A previous study of patients with diabetes found that adolescents curated online personas that allowed them to selectively include their health information while managing the potential negative emotional and social implications such as stigma [17]. Further, a recent case report illustrated how teens may use social media to communicate with peers about their diagnosis and experiences [18]. The report argues that these digital tools may provide a way to cope and enhance relationship building for adolescents with serious illness. As most adolescents use multiple platforms, they can make choices about where and when to share this type of information.

Another area in which social media may enhance the adolescent transplant patient's healthcare experience is supporting adherence. For adolescent patients with complex treatment regimens, there are many factors that can compromise adherence to therapy. Studies of adolescent patients, not focused on transplant patients, have found that issues with adherence have been observed more frequently in adolescents who struggle with psychosocial factors such as low self-esteem, depression, and lack of adult support [19]. Identifying strategies to support adherence aligned with adolescent's developmental phase is a critical priority [20, 21].

Several studies have incorporated technology to support adherence and engagement in adolescent patients. Adolescents who incorporated a motivational texting component for Type I diabetes reported improved self-efficacy and adherence [22]. This type of messaging could be adapted to be direct messaging (DM) on social media. Further, another study incorporated social media into an ongoing intervention and found enhanced motivation for ongoing adherence and engagement within the intervention itself, suggesting that social media could be incorporated into intervention design to support adherence [23].

As adolescents engage in identity development and potentially share health-related information, protecting their privacy is crucial [24-26]. Millions of digital health users have experienced un-permissioned/inappropriate access to their health data [27-30]. Adolescent patients may be particularly vulnerable as they connect most often to these platforms on mobile devices [31]. Wireless signals and sensors rely on broadcasting, which is a risk for eavesdropping, information extraction and tampering [31]. Another challenge on social media is not knowing or not caring about privacy settings. Adolescents often do not change their privacy settings from the default platform setting, which is often public availability [32]. Even when adolescents utilize their privacy settings, they tend to doubt their effectiveness and believe “urban myths” about privacy [33]. Previous studies have found that adolescents tend to consider privacy for social reasons (e.g., maintaining an image) instead of for security reasons [33].

As adolescent patients seek health information online and through social media, they will encounter information with varying degrees of accuracy [34]. Previous studies have shown that adolescents often trust health information found online and are less likely to assess the credibility of online sources compared to adults [35, 36]. One previous study found that adolescents with low health literacy tended to evaluate online health resources based on search position, celebrity endorsement, and picture quality [37]. Further, health posts on social media with misinformation can attain higher levels of popularity (e.g., more likes and shares) than posts disseminating accurate information on the same topic [38-40]. Fortunately, some studies suggest that adolescents have grown more skeptical of online health information. One study found fewer than a quarter of teens believed that social media provided them with helpful information about health [41].

3.2 Social Media Use by Caregivers of Adolescent Transplant Patients

Many caregivers of pediatric transplant patients report using social media to acquire health information. A qualitative study involving caregivers of children with sickle cell disease found that one way caregivers learned of curative options (including hematopoietic cell transplantation) was through social media [42]. Another study of parents of children who had received liver transplants found that over 40% of those surveyed reported regularly receiving information about COVID-19 through social media [43].

3.3 Social Media Potential for Both Patients and Caregivers

One area in which social media can impact both patients and caregivers is via providing enhanced social support. By its very nature, social media incorporates social connection, information sharing, and means of providing feedback and response to that information. Studies have found that social media can enable a sense of belonging and social support [44, 45]. This support may include keeping friends and family updated on the health status of the adolescent patient. This support may also include connecting teens or their parents to online communities of other families facing a similar health situation. Studies have shown that this social support may reduce stress or physical illness and improve psychological and physical well-being [46, 47]. Social support may sustain teens or their caregivers during a prolonged illness, the waiting period for a transplant, or the acute posttransplant time period. Social media can also provide opportunities for sharing knowledge and experiences, which may encourage positive health behaviors [48], and increase health-related self-efficacy [49]. One observational study in Lebanon found that several caregivers of and/or adolescent kidney transplant patients had used Facebook to communicate with other kidney disease patients [50].

Another novel area in which social media may impact the field of pediatric transplant medicine is through information sharing to reach or influence potential donors to increase the donor base. A previous study conducted in Saudi Arabia tested a social media approach to enhance organ donation awareness. The team provided information from social media and evaluated whether this information impacted whether participants would act as organ donors. Findings supported that most participants indicated that they would act as organ donors based on that information [51]. Similarly, a school-based study focused on engaging adolescents in creating educational materials about being an organ donor [52]. Intervention participants were asked to create a short video to share on YouTube about organ transplantation. The study found increased positive attitudes toward organ transplantation among youth in the intervention. Further, the YouTube channel received over 100 k views. A grassroots organ donation advocacy group in New York has presented their experience using various social media platforms to promote awareness around organ donation to local college students, and tracked an increase in visitors to the group's website, engagement in Twitter account, Facebook page, and views on YouTube [53].

Social media could also help facilitate conversations for patients who are candidates to receive organs from living donors. Studies have found that candidates for living donor organ transplantation find it difficult to discuss living donation with people in their social network, and there is a lack of interventions to train them. A previous study tested a Kidney Coach Program to engage possible donors and found it increased possible donors [54]. This may be another route to use social media.

Finally, social media has been used by individuals for specific requests for an organ donation. One previous study examined Facebook for pages seeking kidney donors for a specific individual [55]. In the 91 pages meeting inclusion criteria, the mean age of potential recipients was 37. Approximately a third of the pages reported testing of potential donors, and 10% reported receiving living donor kidney transplants. The pages with successful campaigns tended to provide more information about the transplant candidate, such as photos or stories, as well as more information about living donor transplantation in general. This study found that transplant candidates are already using social media to locate living kidney donors.

While an adolescent with chronic kidney disease may not actively try to identify a potential living donor on social media, their caregiver may try and identify a kidney donor on social media, thus reducing the time spent on dialysis and expediting a necessary transplant. In a previous study, an online questionnaire administered by a transplant team to primary caregivers of pediatric kidney and liver transplant recipients found that 32% of the caregivers who responded used social media to look for a possible liver donor for their child, and 67% of those who used social media found at least one possible living donor through this method [56].

4.1 Research Studies

Social media can be used by clinical and research teams to both recruit adolescent transplant patients into research studies as well as to administer surveys to their caregivers. Facebook advertisements were successfully used to recruit caregivers of children aged 7–17 years old with relapsed and/or refractory cancer into a research study [58]. Another study described using social media groups focused on pediatric liver disease to distribute surveys to caregivers of children with chronic liver disease or pediatric liver transplant to study dietary supplement use in the studied population [59]. Social media recruitment can allow studies to selectively reach and recruit target groups, thus increasing the reach beyond local recruitment efforts.

In studies that have incorporated social media platforms for health interventions, adolescents report high satisfaction and engagement with interventions that target various clinical domains, such as physical activity, weight loss, smoking cessation, and reproductive and mental health [60-63]. These studies have leveraged social media for functions such as sharing peer support messages, promoting goal achievements, and monitoring progress via shared social media posts. Publishing research protocols may also enhance the capacity of other research teams to try new approaches using social media [64].

4.2 Information Delivery

Social media has also been used by healthcare teams to disseminate important information to the caregivers of adolescent transplant patients, especially in recent times of emergency, such as the COVID-19 pandemic. At the beginning of the COVID-19 pandemic in 2020, a kidney transplant team in India conducted a prospective study using several means of communication, one of which was Facebook, to inform their kidney transplant recipient patients and their caregivers about availability of telemedicine services [65]. The team then conducted 296 telemedicine consults via WhatsApp. However, it is notable that WhatsApp is generally considered to be more of a messaging platform, rather than fully interactive social media.