Background
Juvenile Idiopathic Arthritis (JIA) is the most common pediatric rheumatic disease with a prevalence of 132 per 100,000 children [
1]. JIA negatively impacts all aspects of health-related quality of life (HRQL) including physical, emotional, social and role challenges [
2‐
7]. Adolescents living with JIA may be disadvantaged in comparison to healthy same age peers since common developmental goals, such as developing one’s sense of self and becoming independent, become more challenging to achieve as they manage symptoms, therapies, appointments and procedures [
8‐
10]. When compared to healthy peers, adolescents with JIA report increased depression, anxiety, poor self-esteem and social disruption [
2,
5‐
7]. A metasynthesis of qualitative studies of the experiences of adolescents living with JIA found six major domains in which JIA impacted their life: aversion to being different, striving for normality, stigma and misunderstanding, suspension in uncertainty, managing treatment and a desire for knowledge [
11]. The findings from the metasynthesis suggests that social differences (e.g., feeling different from peers, healthy peers not understanding their challenges) contribute to negative experiences for adolescents with JIA. Peer mentoring, therefore, is one method that is ideally suited to meet the unique emotional, social and developmental needs of adolescents with JIA.
Peer mentoring in health care is an explicit form of peer social support in which a trained peer mentor provides emotional, appraisal, and informational support to another person living with a similar condition [
12]. Peer mentoring has been associated with improved diverse health outcomes [
13‐
15]. However a systematic review on interventions to improve psychological adaptation to chronic disease by adolescents concluded that the efficiency of peer support groups requires more research; in particular how to achieve greater reach and adoption using novel information and communication technologies [
16]. Research suggests that only 25 % of youth go online to visit forums or contact other youth with JIA and that these sites are not perceived as relevant (rated as a median of 1.0 out of 10 on a scale of relevance) [
17]. There is a clear need to develop acceptable and accessible social supports for adolescents with JIA.
In order to meet the informational, physical, emotional and social needs of adolescents with JIA, an online peer mentoring intervention, the iPeer2Peer Program, was developed [
13,
18]. The iPeer2Peer Program focuses on pairing an adolescent living with JIA with a trained young person successfully managing JIA. The peer mentors endeavor to act as positive role models to help reinforce self-management of JIA while also providing essential social support to adolescents with JIA. Moreover, acting in a peer mentor role may positively impact the peer mentors’ own self-efficacy and self-management skills [
19]. The iPeer2Peer Program has been successfully tested in pediatric chronic pain populations [
13]. The aims of this study were to determine the feasibility and acceptability of the iPeer2Peer Program in adolescents with JIA as well as to explore effectiveness outcome measures for the purposes of refining the program and methodology before a full scale randomized controlled trial (RCT).
Discussion
The iPeer2Peer Program demonstrated acceptability and feasibility in a sub-sample of adolescents with JIA. In our sample of adolescents, many had few risk factors and/or inactive disease and did not show interest in being matched to a peer mentor in a structured and time intensive manner (e.g., 1–2 calls a week for 2 months). This suggests the iPeer2Peer Program may not be appropriate in its current form for all youth with JIA but instead a specific sub-sample of adolescents who are in need of individualized social support (e.g., whether due to poor social supports, active disease, challenging symptoms). The iPeer2Peer Program would benefit from increased flexibility in the number of calls and the length of the program in order to increase acceptability to larger proportions of adolescent JIA populations. Adolescents sought support for both JIA-related and non-JIA-related issues from their mentors. Secondary outcome analysis indicated significant improvements in adolescents’ perceived ability to manage JIA after participating in the iPeer2Peer Program.
The findings of this pilot study highlight the need for flexibility and individualization of the iPeer2Peer Program. Only 50 % of participants were able to complete ten calls within 8 weeks as suggested. However, call length was consistently twice as long as requested by the study parameters and adolescents reported enjoying the program. Moreover, there were no differences in call length between participants who completed all 10 calls and those who did not. Perhaps deviations from the suggested call schedule in the iPeer2Peer Program (e.g., number of calls, length of time between calls) is more reflective of the need for flexible individualized peer mentoring program as mentees have differing mentoring needs and desires. This is in keeping with the findings of our systematic review of peer support interventions for youth with chronic disease [
14]. Peer support interventions in the systematic review varied significantly with respect to number of peer contacts, length of the program, and focus of the intervention (e.g., disease education, group activity, 1:1 mentoring). Based on this systematic review as well as the findings of this pilot study, we recommend future studies allow participants to choose between five and ten calls that can be completed in up to 12 weeks for 10 calls. Of note, peer mentoring differs from other psychosocial interventions in that it does not involve a standardized intervention protocol with respect to call content but instead a standardized peer mentor training. This allows peer mentors to address the needs of the individual adolescent. Peer mentor training will be adapted to include modules related to individualization of the iPeer2Peer Program (e.g., goals of participation, frequency of calls). Future studies of the iPeer2Peer Program with larger sample sizes should ensure post-participation outcome measurement in all adolescent participants in order to measure whether there is a dose effect of peer mentoring. Future work should also explore how the iPeer2Peer Program peer mentor training could be utilized in other contexts, such as training JIA camp counselors.
The call content of the mentoring calls varied across both JIA-related issues and general life issues. For example, adolescents sought support for transition to adult health care, and also for transition to post-secondary education. Adolescents shared many aspects of their life, not only JIA related concerns and issues. This finding is in contrast to adolescents living with chronic pain who completed the iPeer2Peer Program who focused mostly on pain-related topics [
13]. In comparison to that group, conversations between adolescents and mentors with JIA were more evenly distributed between disease-related and non-disease-related topics. However, every call did involve conversation related to JIA. Adolescents with JIA in this sample had fairly low pain and disease activity levels which may have resulted in more conversations about life outside of their disease. Peer mentor training is focused on the practical process of and how to help adolescents come to their own decisions (e.g., helping develop SMART goals instead of providing solutions). This allowed the peer mentors to discuss issues unrelated to JIA and is an important part of the mentor role of being supportive to the whole person. Providing support to the whole adolescent can address physical, emotional, social and role challenges which in turn positively impacting HRQL across many domains.
Participants enrolled in the iPeer2Peer Program were mostly female. Although JIA clinical populations tend to be prominently female, the number of females recruited was over and above what would be expected based on clinical referrals or prevalence. This might be indicative of a gender difference in interest in the iPeer2Peer Program. The male participants who were enrolled in the program completed fewer than the 10 calls suggested. Male call content also differed from female call content as males tended to be factual and many conversations were in the form of questions and answers related to JIA disease information, medications, procedures and experiences. Male adolescents may prefer less intensive peer mentoring interventions or interventions that are geared towards having specific questions answered as opposed to personal sharing, which is typically uncharacteristic of male adolescent peer relationships [
27]. Future work is needed to determine the preferences of adolescent males with respect to type of peer mentor and type of program (e.g., drop-in format, fewer sessions, group format, instant messaging). This further emphasizes that individualization is an essential component of effective peer mentorship programs like the iPeer2Peer Program.
The iPeer2Peer Program is unique in the use of online Skype video calls to connect adolescents to their peer mentors. Research in adult mentorship for vulnerable and underprivileged youth via email alone found that deep connections between youth and mentors were rare [
28]. Research in youth with disabilities found that online mentoring via email was only partially successful [
29]. Upon investigation, unsuccessful pairs used a formal tone in their writing while successful pairs were more informal and supportive [
30]. By using video calls, the iPeer2Peer Program circumvents this issue as adolescents meet virtually face-to-face with their mentors allowing for a casual conversational tone. Providing the face-to-face interactions meant that adolescents were able to connect and develop relationships with their mentors that would otherwise be challenging when not in “real-time”. However, using online video calls is not without its challenges, as it requires that adolescents and their mentors schedule their time. The majority of missed or rescheduled calls from this study were the result of tests, assignments and exams. As tests, assignments and exams are a normal part of life for both adolescents and young adult mentors, increasing peer mentor training surrounding issues of scheduling calls and ensuring protected time for calls is warranted. In addition, although only three eligible patients were not able to participate because of insufficient Internet access, this does remind us that there are still adolescents with poor or no Internet access. These young people may be particularly vulnerable and feel even more isolated than those with JIA who have more ability to connect with the world through the Internet. This is particularly relevant in today’s youth given the ubiquitous nature of smartphones and social media use. In future, the iPeer2Peer Program will be offered via telephone to these youth to ensure they have access to a peer mentor.
Results of this pilot study must be interpreted in light of several limitations. Despite favorable findings, sample size in this study was small, secondary analyses were underpowered, and multiple testing corrections were not applied thus significant p-values should be reviewed with caution. The limited sample size also prevented any examinations of outcomes by cultural or socio-economic status as well as mentor quality to account for differences between mentors. Future full scale RCTs with adequate sample sizes could address these limitations. Moreover, recruitment was limited to one tertiary care pediatric hospital thus limiting the generalizability of the results. The sample was also mostly female and mean disease activity ratings were low suggesting some adolescents may not have had active disease. This may, in part, be reflective of Research Ethics Board (REB) protections put in place by the hospital that prevents patients from being approached by numerous studies such that not all eligible participants were approached by our research team (e.g., another ongoing study involving a self-management intervention limited our ability to approach many patients). Nevertheless, more work is needed to determine whether gender based and disease based (e.g., disease severity, newly diagnosed) differences exist and how best to adapt the program for all youth with JIA. The REB at the tertiary care hospital also stipulates that a member of the health care team must first approach potential participants before a research assistant can introduce the study. This precaution may have resulted in potential participants being labeled by the health care team as ineligible for reasons such as personality (e.g., shy, unreliable), inactive JIA, or patient transitioning to a community clinic. This may have inadvertently inflated our number of ‘ineligible’ participants. Call log data did not take into account the length of time participant-mentor pairings spoke on each specific topic. Future work would benefit from detailed analysis of call log data. Lastly, this pilot study did not incorporate a cost-benefit analysis in order to determine whether peer mentoring is cost effective. The cost-benefit analysis would need to consider not only the mentor time commitment but also the staff requirements with respects to ongoing day-to-day management of the iPeer2Peer Program (e.g., recruiting and training mentors, matching mentors to adolescents, offering support when needed with scheduling).
Acknowledgement
Not applicable.