A thematic analysis of patients’ and their informal caregivers’ gendered experiences in traumatic brain injury

Abstract

Purpose

Research shows that patients’ perceptions of themselves and others, in addition to their understanding of the concept of gender, changes after traumatic brain injury (TBI). Little is known about gendered experiences in TBI and care delivery. This study aims to explore perceptions of gender through life experiences and interactions between adult patients with TBI and their informal caregivers.

Materials and Methods

Seven patients with mild and moderate-severe TBI and eight informal caregivers were interviewed. Transcripts were coded and analysed according to Braun and Clarke’s thematic analysis. The Consolidated Criteria for Reporting Qualitative Research guidelines were followed in reporting results.

Results

The participants described a transformation of their understanding and experiences of gender following the TBI event. Three themes were identified: (1) Gender designations of "man" and "woman";( 2) Post-injury performativity of gender; and (3) Gender in giving and receiving care.

Conclusions

The findings emphasize the importance of raising awareness among researchers and practitioners on gender as a transformative process for patients with TBI and informal caregivers after the injury. The diversity of patient-caregiver experiences and critical needs based on gender call for intervention approaches that mitigate gender disparities in giving and receiving care.

Implications for Rehabilitation

• Historically, rehabilitation of persons with traumatic brain injury has targeted physical and cognitive impairments, with little attention to their gendered demands in the lived environment.

• Gender prevails in the lived experiences of persons with traumatic brain injury, and their informal caregivers, and in giving and receiving quality care.

• A major challenge for clinicians is identifying harmful gendered roles, norms, and relations and the affective/behavioral problems they produce to alleviate enduring distress and reduce disability.

• Rehabilitation interventions focusing on flexible and adaptive responses to gendered demands in the lived environment of persons with traumatic brain injury are timely.

Keywords:

• Behaviours and expressions
• lived experiences
• men and women
• patient-caregiver dyad
• roles and responsibilities
• traumatic brain injury
• sex and gender

Acknowledgements

We remain thankful to patients with traumatic brain injury and their family members who volunteered their time to participate. We also wish to express our sincere gratitude to Ms. Shirin Mollayeva, research associate at the KITE-Toronto Rehab – University Health Network, for proofreading the final version of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The datasets generated during and/or analysed during the current study are available in the KITE Toronto Rehabilitation Institute repository under accession KT Gender study. Data sharing ethics’ agreements prohibit KITE Toronto Rehabilitation Institute from making the data publicly available. The analyses and underlying analytic codes with quotes are available in Supplementary files and individual coders’ analyses are available from the authors upon request.

Additional information

Funding

This research was supported by an operating grant from the Canadian Institutes of Health Research, Institute of Gender and Health [#CGW-126580] and by Canada Research Chair Programs. The funders had no role in study design, data collection, decision to publish, or preparation of the manuscript.