Brown Cara L, Restall Gayle, Diaz Francis Austin S, Anang Polina, Gerhold Kerstin, Pylypjuk Heidi, Wittmeier Kristy
Department of Occupational Therapy, College of Rehabilitation Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Rady Faculty of Health Sciences, Max Rady College of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
Can J Pain. 2023 Jan 26;7(1):2146489. doi: 10.1080/24740527.2022.2146489. eCollection 2023.
There is a perceived lack of readily available resources to support self-management skills in youth living with chronic pain. The perspectives of youth regarding information gaps may improve the effectiveness of resources developed for them.
The aim of this study was to explore the perspectives of youth living with chronic pain on the interactions among their pain experiences, chronic pain resources and research.
Using an interpretive paradigm, we interviewed seven participants (age range 12-19 years) diagnosed with chronic pain. Two frameworks for meaningful engagement of citizens in research and policy informed the interview guide. Data were analyzed inductively using content analysis approaches to examine patterns and develop themes.
The participants' perceptions were captured by the overarching theme of "understand me." Four subthemes elaborate on the relationship between the participants' experiences and how their lives could be enhanced through research and knowledge mobilization. In the subtheme "my unique pain experience," the participants help us understand them by chronicling the variation in presentation of their chronic pain. The subtheme "people don't know it's a thing" emphasizes that there is general misunderstanding of chronic pain by the public and in the participants' support systems. The first two subthemes influence the third, which describes how the pain "kind of stops you from living." The fourth subtheme, "knowledge offers hope," offers a solution to dismantling misunderstanding of youth living with chronic pain.
Future work needs to focus on embedding health literacy and knowledge mobilization into health and education structures to promote developmentally relevant self-management skills.
人们认为缺乏现成的资源来支持慢性疼痛青少年的自我管理技能。青少年对信息差距的看法可能会提高为他们开发的资源的有效性。
本研究的目的是探讨慢性疼痛青少年对其疼痛经历、慢性疼痛资源和研究之间相互作用的看法。
采用解释性范式，我们采访了7名被诊断为慢性疼痛的参与者（年龄在12 - 19岁之间）。公民有意义地参与研究和政策的两个框架为访谈指南提供了参考。使用内容分析方法对数据进行归纳分析，以检查模式并形成主题。
参与者的看法被“理解我”这一总体主题所涵盖。四个子主题阐述了参与者的经历与如何通过研究和知识传播来改善他们生活之间的关系。在“我独特的疼痛经历”这一子主题中，参与者通过记录他们慢性疼痛表现的差异来帮助我们了解他们。“人们不知道这是个问题”这一子主题强调公众以及参与者的支持系统对慢性疼痛普遍存在误解。前两个子主题影响了第三个子主题，该子主题描述了疼痛“在某种程度上阻碍了你的生活”。第四个子主题“知识带来希望”为消除对慢性疼痛青少年的误解提供了解决方案。
未来的工作需要专注于将健康素养和知识传播融入健康和教育结构中，以促进与发展阶段相关的自我管理技能。
