Knowledge of sex and gender and related information needs in patients with traumatic brain injury: in-depth interview study

Aim: This research aimed to gain an understanding of biological sex and social gender phenomena experienced by patients with traumatic brain injury in recovery, and to understand the educational needs of this group. Methods: We conducted semi-structured interviews of 40 adult patients (22 men, 18 women) of different ages, education levels, and ethnicities, with diagnoses of mild and moderate-severe traumatic brain injury at the acute and chronic stages post-injury. Results: Applying classic content analysis with inductive coding, three overarching themes that limited patients' knowledge and subsequent efforts to obtain information on the topic emerged: (1) the complexity of sex and gender subject matters, (2) patients' dependence on others, and (3) uncertainty about the course of recovery. The first diminished the patient's desire to seek further information. Dependence on others and trust that others were in a better position to use the information, compelled patients to redirect the need for education to clinicians, significant others, and the public on the unique post-injury experiences of men and women. Uncertainty about what to expect in the acute phases, and a feeling of identity loss in the chronic phases, established patients' desire to seek out only the information they believed to be necessary for them to carry on with life. Conclusions: In developing recommendations for patient education, variations in patients' knowledge and desire for information, and the reasons behind these variations, should be considered. Improving injury prognosis requires taking into account the gendered context of injury and recovery from it.