Short term effectiveness and experiences of a peer guided web-based self-management intervention for young adults with juvenile idiopathic arthritis

Abstract

BackgroundA web-based self-management intervention guided by peer-trainers was developed to support young adults’ self-management in coping with Juvenile Idiopathic Arthritis (JIA). To investigate its effectiveness, a randomized controlled trial (RCT) was conducted. In addition, the content of the chat and participants’ goals were studied to identify underlying processes.MethodsAn RCT with a six-month follow up period was conducted among 72 young adults with JIA, aged between 16 and 25 years old, randomly assigned to the intervention or to the usual care control group. After 24 weeks, in both groups 24 participants completed all measurements. Intentions to treat analyses were carried out by means of linear mixed models for longitudinal measurements. With self-efficacy as primary outcome, self-management, disease activity, quality of life, absenteeism of school/work, health care medication use and adherence to the intervention were studied. The participants’ goals, personal achievements, interactions on the chat, and their appreciation of the intervention were analyzed using thematic analyses.ResultsNo significant differences were found on self-efficacy, quality of life, and self-management between the participants of the control group and the intervention group. In the intervention group, modeling and sharing experiences were the most recognized themes. Fifty-five goals were formulated and divided into the following categories: improvement and maintaining balance, setting and recognizing boundaries, communicating and coping with incomprehension. Adherence, appreciation of the own learning experience, and personal achievements were rated positively.ConclusionThe web-based intervention did not lead to an improvement of self-efficacy. However, additional qualitative analyses showed that the intervention was appreciated and valuable for the participants. More research is needed on how to measure the added value of this intervention compared to the usual care.Trial registrationTrial registration number NTR4679.

Electronic Mentoring Programs and Interventions for Children and Youth With Disabilities: Systematic Review

“…The e-mentoring interventions varied in their delivery format and involved 1 or more of the following: interactive websites [13,55-60], virtual environment [27,61-63], email [19,47,64-71], mobile apps [60,63,72], Skype video calls [60,73-75], and phone calls [68,71]. Overall, studies involving e-mentoring apps reported they were a feasible and helpful tool for facilitating students’ understanding [60,72].…”

“…Studies including email-based mentorship programs reported improved mentor-mentee communication [64,65,70], particularly with respect to personal, more informal communication [19,47,70]. When compared with face-to-face mentoring, e-mentoring through interactive websites had similar outcomes for self-efficacy, quality of life, and self-management [55] and for dealing with daily life [57], but were reported to be feasible [57,60] and fun [13] while providing a safe environment for socialization [58]. Skype-based mentorship programs were feasible [73], provided flexibility [74], were informational, and provided appraisal and emotional support [75].…”

Peer Support in the Treatment of Chronic Pain in Adolescents: A Review of the Literature and Available Resources

“…The Dutch developers of “Challenge your arthritis” completed the planned randomized controlled trial and published the results in 2017 [ 54 ]. A total of 72 patients with JIA were randomized into two equally sized groups.…”

A 4-Week Electronic-Mentoring Employment Intervention for Youth With Physical Disabilities: Pilot Randomized Controlled Trial

“…These results differ from the outcomes of our 12-week version (ie, 1 weekly topic) of this intervention [6], where we found a significant improvement in self-determination in the experimental group compared with the controls. Although other studies on e-mentoring interventions for youth with disabilities have shown significant improvements in self-determination [20,49], very few of these studies had RCT or other rigorous designs [14]. Of the few studies that have had an RCT design, that is, Ammerlaan et al [49] explored the impact of their interactive, group-based website for youth with juvenile arthritis, they also found no significant differences between the experimental and control groups on self-efficacy, quality of life, or self-management.…”

“…Although other studies on e-mentoring interventions for youth with disabilities have shown significant improvements in self-determination [20,49], very few of these studies had RCT or other rigorous designs [14]. Of the few studies that have had an RCT design, that is, Ammerlaan et al [49] explored the impact of their interactive, group-based website for youth with juvenile arthritis, they also found no significant differences between the experimental and control groups on self-efficacy, quality of life, or self-management. Therefore, further testing and RCTs are needed to better understand how we can best design (ie, format, length and content) an intervention for youth with physical disabilities.…”