Roadmap to the 'Chronic Pain GPS for Adolescents' Intervention: Content and Design Considerations for a Group Peer Support Intervention.

OBJECTIVES: A biopsychosocial approach to understanding and treating pain is crucial; however, there are limited socially targeted interventions for adolescents with chronic pain (ACP). Peer support interventions implemented with other populations are associated with positive outcomes. ACPs perceive peer support to have high potential value. This study explored the preferences of ACP regarding the content and design of a group peer support intervention. METHODS: Fourteen ACP (M age : 15.21 y; 9 females; 3 males, 1 nonbinary, and 1 gender questioning) completed a virtual interview and survey. Interviews were analyzed using inductive qualitative content analysis, and surveys were analyzed using descriptive statistics. RESULTS: Adolescents described how they want to both talk and do activities together within a fun and casual environment with a facilitator present-ideally, someone with lived experience of chronic pain. Preferences were for a medium-sized group intervention that was in-person, at a consistent time on a weekday after school, and semi-structured. Barriers to attending and engaging in the potential group peer intervention were also discussed. DISCUSSION: ACPs desire a facilitated socially focused intervention that provides them with the opportunity to spend time with other ACPs. A group peer support environment where ACPs can provide and receive peer support through sharing their experiences with others who understand them as well as engage in activities was described. The findings from this study provide insights for the development of a group peer support intervention.

Co-designing clinical trials alongside youth with chronic pain.

Youth have a right to participate in research that will inform the care that they receive. Engagement with children and young people has been shown to improve rates of enrollment and retention in clinical trials as well as reduce research waste. The aim of the study is to gain practical insight on the design of trials specifically on (1) recruitment and retention preferences, (2) potential barriers to research, and (3) study design optimization. Based on this youth engagement, we will co-design two clinical trials in headaches with youth. Two recruitment strategies were used to recruit 16 youth from across Canada (aged 15-18 years) from an existing youth group, the KidsCan Young Persons' Research Advisory Group (YPRAG) and a new youth group in collaboration with Solutions for Kids in Pain (SKIP). Four virtual, semi-structured discussion groups were held between April and December 2020, which included pre-circulated materials and utilized two distinct upcoming planned trials as examples for specific methods feedback. Individual engagement evaluations were completed following the final group session using the Public and Patient Engagement Evaluation Tool. Descriptive results were shared with participants prior to publication to ensure appropriate interpretation. The discussion was centred around three themes: recruitment and retention preferences, potential barriers to participation, and study design optimization. Youth indicated that they would prefer to be contacted for a potential study directly by their physician (not over social media), that they would like to develop rapport with study staff, and that one of the barriers to participation is the time commitment. The youth also provided feedback on the design of the clinical trial including outcome measurement tools, data collection, and engagement methods. Feedback on the virtual format of the engagement events indicated that participants appreciated the ease of the online discussion and that the open-ended discussion allowed for easy exchange of ideas. They felt that despite a gender imbalance (towards females) it was an overall inclusive environment. All participants reported believing that their engagement will make a difference to the work of the research team in designing the clinical trials. Perspectives from a diverse group of youth meaningfully improved the design and conduct of two clinical trials for headaches in children. This study provides a framework for future researchers to engage youth in the co-design of clinical trials using online engagement sessions.

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

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.

Partnering For Pain: a Priority Setting Partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada.

BACKGROUND: Chronic pain affects 1-3 million Canadian children and adolescents and their families. The primary objective of the Partnering For Pain project was to collaboratively identify the top 10 research priorities in pediatric chronic pain. METHODS: Partnering For Pain took a patient-oriented research approach and followed a modified James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities in pediatric chronic pain according to people with lived experience (patients), family members and health care providers (clinicians). The PSP was completed in 4 phases between May and December 2018: 1) national survey of stakeholders, including those with lived experience with pediatric chronic pain, family members and clinicians who treat children with chronic pain, to gather priorities, 2) data processing, 3) interim prioritization by invited patients, family members and clinicians (former research participants or identified through pediatric chronic pain programs, patient partner organizations and steering committee member networks) and 4) in-person priority-setting workshop involving patients, family members and clinicians identified via steering committee networks and partner organizations, with evaluation of patient engagement. The process was led by a national steering committee of patient and parent partners, researchers and clinicians engaged in codesign, analysis and translation of project findings. RESULTS: In phase 1, 215 Canadians (86 patients [40.0%], 56 family members [26.0%] and 73 clinicians [34.0%]) submitted 540 potential priorities that were developed into 112 unique research questions (phase 2). Of the 112 questions, 63 were rated for importance by 57 participants (19 patients [33%], 17 family members [30%] and 21 clinicians [37%]) in phase 3. In phase 4, 20 participants (6 patients [30%], 6 family members [30%] and 8 clinicians [40%]) discussed the 25 most highly rated questions and reached consensus on the final top 10. INTERPRETATION: The final priorities address pediatric chronic pain prevention, impact and treatment, as well as delivery, access and coordination of care. The priorities reflect a directed and collaborative call to action to improve existing pediatric pain research and care. PLAIN LANGUAGE SUMMARY: Chronic pain affects 1 in 5 children and teens. This means that 1-3 million Canadian youth deal with pain lasting months to years. This pain gets in the way of being active, sleeping, going to school, and getting along with friends and family. Youth with chronic pain and their families are experts on what it's like to live with pain, but, until now, research has not asked what issues they care about most. The goal of the Partnering For Pain project was to develop a list of the 10 most important things we still need to learn about chronic pain during childhood according to people who live with it, their families and health care providers. We did this in 4 steps: 1) a survey with 215 people who shared 540 concerns they have about chronic pain in childhood, 2) turning those concerns into questions that can be answered by research, 3) a survey with 57 people who ranked how important each research question was and 4) an in-person discussion with 20 people who chose the top 10 research priorities. Each step included Canadians who have had chronic pain during childhood, their families and health care providers. The final top 10 list has questions about how to better prevent and care for children and teens with chronic pain. These priorities make sure that future research focuses on what is most important to people who will use it in their everyday lives. Project video: https://youtu.be/wA-RwrFiSPk. Project website: www.partneringforpain.com.