Head Injury Clinic, Trauma and Neurosurgery Program, St. Michael's Hospital, University of Toronto, Toronto, ON, Canada.
Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
Can J Neurol Sci. 2020 Mar;47(2):202-209. doi: 10.1017/cjn.2019.324.
Involving stakeholders has been acknowledged as a way to improve quality and relevance in health research. The mechanisms that support effective research engagement with stakeholders have not been studied in the area of concussion. Concussion is a large public health concern worldwide with billions of dollars spent on health care services and research with improvements in care and service delivery not moving forward as quickly as desired. Enabling effective stakeholder engagement could improve concussion research and care.
The aim of the study was to identify potential benefits, challenges, and motivators to engaging in research by gathering the perspectives of adults with lived experience of concussion.
A thematic analysis of qualitative responses collected from a convenience sample attending a provincial brain injury conference (n = 60) was undertaken using open coding followed by axial coding.
Four themes regarding benefits to engagement emerged: first-hand account, meaningful recovery, research relevance, and better understanding of gaps. Three forces inhibited engagement: environmental barriers, injury-related constraints, and personal deterrents. Four enablers supported engagement: focus on positive impact, build connections, create a supportive environment, and provide financial assistance.
Understanding stakeholder's perspectives on research engagement is an important issue that may serve to improve research quality. There may be unique nuances at play with injury-specific stakeholders that require researchers to consider a balance between reducing inhibitors while supporting enablers. These findings are preliminary and limited. Nevertheless, they provide needed insight and guidance for ongoing investigation regarding improvement of stakeholder engagement in concussion research.
让利益相关者参与进来已被公认为提高卫生研究质量和相关性的一种方式。在脑震荡领域，尚未研究支持与利益相关者进行有效研究合作的机制。脑震荡是一个全球性的重大公共卫生问题，全球在医疗保健服务和研究上花费了数十亿美元，但改善护理和服务的进展并没有像预期的那样迅速。使利益相关者能够有效地参与进来，可以改善脑震荡研究和护理。
本研究旨在通过收集有脑震荡经历的成年人的观点，确定参与研究的潜在益处、挑战和动机。
对参加省级脑损伤会议的便利样本（n=60）的定性反应进行主题分析，采用开放式编码，然后是轴向编码。
有四个主题涉及参与的益处：第一手资料、有意义的康复、研究相关性和更好地了解差距。有三个因素阻碍了参与：环境障碍、与伤害相关的限制和个人障碍。有四个因素支持了参与：关注积极影响、建立联系、创造支持性环境和提供财政援助。
了解利益相关者对研究参与的看法是一个重要问题，这可能有助于提高研究质量。特定于损伤的利益相关者可能存在独特的细微差别，这要求研究人员在减少抑制剂的同时支持促进因素之间取得平衡。这些发现是初步的，有限的。尽管如此，它们为正在进行的关于改善脑震荡研究中利益相关者参与的调查提供了必要的见解和指导。
