Department of Rehabilitation, Université Laval, Québec, Canada.
Centre Interdisciplinaire de Recherche en Réadaptation et Intégration Sociale (CIRRIS), Québec, Canada.
Disabil Rehabil. 2021 Jul;43(14):2045-2054. doi: 10.1080/09638288.2019.1686543. Epub 2019 Nov 15.
Different studies and two clinical practice guidelines emphasize the necessity to provide patients undergoing rehabilitation with information about commonly occurring changes in sexuality following traumatic brain injury (TBI). The purpose of this study was to co-create information resources for individuals with moderate to severe TBI and their partners to consult during rehabilitation.
An iterative user-centered design was used, combining focus group and individual interviews. A convenience sample of individuals with TBI and life partners was constituted.
The needs and expectations of these participants in terms of form and content of an information toolkit on post-TBI sexuality were explored. The subjects that matched the interests and needs of participants were numerous and supported by the literature. Contrasting with existing written resources, the participants' views oriented the creation process toward the development of a toolkit including five audiovisual presentations, a double-sided information sheet, and a checklist.
A similar approach of co-creation could be used to develop other information packs aimed at patients with other disabilities. The created material is expected to be a usable and useful tool for individuals with TBI, which can support clinicians in addressing the subject of sexuality.Implications for rehabilitationThe central role held by individuals with moderate to severe traumatic brain injury, in identifying the sexuality related topics to be addressed and the form of resources to be created, led to a better understanding of their needs.This patient-centered research brought solutions to difficulties related to the understanding of health information, prevalent among patients.This patient-oriented project highlights the necessity for adequacy between the health information provided by rehabilitation professionals and the capacity of their patients' to seek for, process, and understand its content.
不同的研究和两项临床实践指南强调，有必要向接受康复治疗的患者提供有关创伤性脑损伤（TBI）后常见性功能变化的信息。本研究的目的是共同创建针对中度至重度 TBI 患者及其伴侣在康复期间咨询的信息资源。
使用迭代的以用户为中心的设计，结合焦点小组和个人访谈。构成了 TBI 和生活伴侣的便利样本。
探讨了这些参与者对 TBI 后性行为信息工具包的形式和内容的需求和期望。与现有书面资源相比，参与者的观点指导了创建过程，即开发一个包含五个视听演示、双面信息单和检查表的工具包。
类似的共同创作方法可用于开发针对其他残疾患者的其他信息包。预计所创建的材料将是 TBI 患者的一种可用且有用的工具，它可以支持临床医生解决性问题。
中度至重度创伤性脑损伤患者在确定要解决的与性相关的主题以及要创建的资源形式方面发挥着核心作用，这使他们更好地了解了自己的需求。
这项以患者为中心的研究解决了患者普遍存在的理解健康信息方面的困难。
这个以患者为导向的项目强调了康复专业人员提供的健康信息与患者寻求、处理和理解其内容的能力之间的充分性。
