Co-creation of a post-traumatic brain injury sexuality information toolkit: a patient-oriented project

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.