The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates patient partners throughout its governance and operations meaning that patient partners may contribute to research projects in ways that warrant scientific authorship as defined by the International Committee of Medical Journal Editors. The Network did a brief informal review of guidance on patient authorship in 2019, but could not find any practical documentation to guide its members on this topic. Note the term patient partner here refers to a patient (or caregiver or other person with lived experience) who is a partner or collaborator on a research team. This guidance does not address patients as participants in a research study. This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided. Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, we have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams. This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful.
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.
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