Invited Manuscript Poster on Renal-Related Education American Society of Nephrology, Nov. 16–21, 2010 Adolescents with Chronic Kidney Disease and Their Need for Online Peer Mentoring: A Qualitative Investigation of Social Support and Healthcare Transition

Abstract

Adolescents with chronic kidney disease (CKD) tend to be isolated from peers who also have CKD, develop nonadherent behavior with treatment recommendations, and consequently are at higher risk for poor health outcomes such as transplant rejection. At the same time, patients in this age group tend to be technologically savvy and well-versed in using Internet-based communication tools to connect with other people. In this study, we conducted semi-structured interviews among adolescents with CKD to assess their information needs and their interest in using a CKD-oriented peer-mentoring website that we are developing, kTalk.org. We interviewed 17 adolescents with CKD, ages 14-18 years old, to learn about (1) any concerns regarding transition from pediatric to adult care teams; and (2) their interest in using the Internet as a source for disease-related information and as a social networking tool for finding and interacting with their peers. The interviews were digitally recorded, transcribed, and qualitatively analyzed. Results showed that (1) the adolescent participants are commonly concerned about transitioning to an adult clinic; (2) they are isolated from peers with the same medical condition who are of similar age; (3) they are frequent Facebook users and are highly interested in exploring the possibility of using an online community website, such as kTalk.org, to discover and communicate with peers and peer mentors; and (4) there exist divergent opinions regarding if an online community of adolescent CKD patients should be open to the public.

Patient‐to‐patient peer mentor support in dialysis: Improving the patient experience

“…Patients receiving hemodialysis in these centers spend large amounts of time with other patients during transportation to and from the centers, in waiting rooms, and during the extended treatment times of 3‐5 hours. While this can be a somewhat social occasion with many socially appropriate conversations, many patients feel isolated from others and are reluctant to share their concerns or healthcare challenges with other peer patients . When healthcare issues are shared and patients are providing advice to other patients, concerns have been raised that inappropriate information may be informally shared .…”

“…Over the first 4 years, the peer support program has shown evidence of a beneficial impact on healthy behaviors. Network groups can use online forums with varying success, particularly in younger adults who prefer to use more popular social media platforms . Although various patient‐to‐patient peer mentor models have been reported, the importance of mentor training is at the forefront of successful programs, whatever the model.…”

“…While this can be a somewhat social occasion with many socially appropriate conversations, 9 many patients feel isolated from others and are reluctant to share their concerns or healthcare challenges with other peer patients. 10 When healthcare issues are shared and patients are providing advice to other patients, concerns have been raised that inappropriate information may be informally shared. 11 Thus, for dialysis patients to receive appropriate, constructive peer support, centers are required to engage in, or to develop, peer support programs to "allow" and encourage patients to provide peer support to each other.…”

Adolescents with chronic disease and social media: a cross-sectional study

“…Eight studies in literature focused on adolescents using social media to help endure their long-term conditions,11 12 21–24 27 28 while three included both adolescents and adults 14–16. Among these, four evaluated Facebook,11 12 15 23 while the majority explored less known platforms, such as Starbright,21 Zora22 and Web 2.0,14 16 17 created ad hoc for exchanging disease information between patients and doctors.…”

“…The second one, analysed in this work, concerns the possible role of social media in reducing suffering, anxiety, sense of loneliness and disease burden, responding to the need for peer relationships 10 12 15 18–24…”