Perceptions of Adolescents With Chronic Pain About Peer Support: Reflexive Thematic Analysis

Abstract

Objective Social challenges are a common experience for adolescents with chronic pain. Group peer support for these adolescents could be a promising intervention; however, no studies have focused exclusively on the peer support needs of this population. The present study addressed this gap in the literature. Methods Adolescents with chronic pain between 12 and 17 years of age completed a virtual interview and demographics questionnaire. Interviews were analyzed using inductive reflexive thematic analysis. Results Fourteen adolescents (Mage: 15.21 years; 9 females; 3 males, 1 nonbinary, 1 gender questioning) with chronic pain participated. Three themes were generated: “Being Misunderstood,” “They Would Understand Me,” and “Moving Forward Together in Our Pain Journeys.” Adolescents with chronic pain feel misunderstood and under supported by their peers without pain leading to feeling “othered” by having to explain their pain, yet not feeling free to talk about their pain with friends. Adolescents with chronic pain expressed that peer support would provide the forms of social support they are missing amongst their friends without pain as well as companionship and a sense of belonging due to shared knowledge and experiences. Conclusions Adolescents with chronic pain desire peer support from others like themselves, highlighting the challenges in their everyday friendships as the impetus for this support, as well as their anticipated short- and long-term benefits, including learning from their peers and developing new friendships. Findings indicate that adolescents with chronic pain may benefit from group peer support. Findings will inform the development of a peer support intervention for this population.

Roadmap to the ‘Chronic Pain GPS for Adolescents’ Intervention

“…17,36 Mirroring our findings, Ahola Kohut et al 37 analyzed the content of peer mentoring calls among adolescents with chronic illnesses and found that the mentors and mentees spoke mostly about nonillness related issues (eg, interests, current events) as well as the impact of their condition on things like relationships and school/work. Given that ACPs perceive GPS as helping to facilitate relationships, 7 this study underscores that although having pain in common may be important, it is not the only thing that ACPs want to connect over. In fact, findings such as these were highlighted in work exploring naturally developing friendships among ACPs attending a self-management program 34 ; only having pain in common was one of the main reasons ACPs did not want to develop friendships with other ACPs.…”

“…33 ACPs have stated that they need support from other ACPs, given the lack of social support they receive from their peers without pain. 7 The current study explored ACPs' preferences for a GPS intervention. The findings suggest that…”

“…3,5 Furthermore, ACPs have reported feeling misunderstood and othered by their pain-free peers. 3,[5][6][7] Altogether, these social challenges that ACPs experience result in a lack of social support from their peers without chronic pain. 6,7 The biopsychosocial approach to understanding and managing pediatric pain involves considering all 3 of these domains as influences that play a role in the pain experience.…”

“…3,[5][6][7] Altogether, these social challenges that ACPs experience result in a lack of social support from their peers without chronic pain. 6,7 The biopsychosocial approach to understanding and managing pediatric pain involves considering all 3 of these domains as influences that play a role in the pain experience. 8 Typical interventions for ACPs include physical, psychological, and pharmacological approaches and are often provided in a one-on-one setting; critically, socially focused interventions are often lacking.…”

“…7 ACPs reported that a GPS intervention is needed and would be beneficial in the immediate/short-term as they would have a safe space to feel understood and like they belong; in the long-term, ACPs envisioned developing meaningful friendships and sharing information with each other, which they perceived could help them cope with their pain into the future. 7 Thus, a GPS intervention for ACPs is promising. Given that ACPs have identified the need for GPS, the next step is developing an intervention that meets their needs.…”