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

Abstract

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.

IMPLICATIONS FOR REHABILITATION

• Sex/gender issues in traumatic brain injury are complex; the challenge is identifying which information is most relevant for patients; this research assessed patients’ knowledge of and interest in sex/gender-related topics in traumatic brain injury.

• Evidence shows most patients unable to differentiate between sex and gender, but when asked about living as a man or woman with traumatic brain injury, disturbed gender roles and identities became evident.

• Gender shapes the health status trajectory and outcomes of patients with traumatic brain injury which becomes evident when attention is paid to patients’ personal life stories.

• To improve traumatic brain injury prognosis, clinicians should tailor management plans taking into account gender, an amalgamation of biological, behavioural, cultural, and social characteristics of their patients.

• In research, explicit and consistent consideration of the interrelated constructs of sex and gender would produce a better understanding of the different mechanisms that shape the course of traumatic brain injury.

Keywords:

• MeSH-compliant keywords: sex
• gender and health
• knowledge framework
• clinical decision
• patient clinician partnership

Acknowledgements

This research was developed with endorsement by patient and public organizations including Ontario Neurotrauma Foundation, DisAbled Women’s Network Canada and Brain Injury Canada [13]. These organizations acted as a liaison between our research team, patients and the public. We wish to express sincere gratitude to Dr. Richard Riopelle, member of the Brain Injury Canada Board of Directors, a primary knowledge user on the grant, and other research team members Dr. Cullen, Dr. Escobar, Dr. Velikonja, Dr. Marshall, and Ms. Lin Haag for their contributions to the grant development and interpretation of results. We also wish to express our sincere gratitude to Ms. Vanessa Amodio for study data collection and Ms. Shirin Mollayeva, research associate at the KITE-Toronto Rehab – UHN for her assistance in checking data, organization of the figure and proofreading the final version of the manuscript.

Disclosure statement

The authors declare no competing interests.

Additional information

Funding

This work was supported by a research grant from the Canadian Institutes for Health Research – Institute for Gender and Health (#CGW-126580).