What about the survivors?

| February 28, 2018

Research into those who have sustained traumatic brain injuries has been largely gender-neutral, however practitioner and UWS academic, Kate O’Reilly is currently conducting a study into the effects of brain injury on woman. She calls for participants in her research.

For many, the Australian summer and Easter holidays involves catching up with family and friends and travelling up and down the coast line to escape the oppressive heat and enjoy the sun, sand and surf. While this sounds idyllic, for some this has catastrophic consequences. With unfortunate regularity, at these times of year we hear about the increase in the road death toll and the devastating deaths from domestic violence. This however, is only part of a story which in fact extends well beyond our holiday season and cuts across the full year and lifetimes for many.

This summer holiday season we repeatedly heard about and saw images of an horrific motor vehicle accident on the south coast of NSW, devastatingly a family were lost. The Australian road toll for 2017 shows that 1225 people died on our roads and on average one woman a week in Australia is killed by a partner or former partner.

These statistics are extraordinary but the story which remains hidden are of the many people who survive accident and violence which results in penetrating, crushing, or blunt force trauma to the brain. Injury to the brain challenges us, as we very quickly default to an assumption that a person is less capable, it seems that once the brain is injured the conversation becomes less palatable. Maybe this is a contributing factor to why death rates are reported but survival with impairment disappears from the discourse.

Traumatic brain injury ranges from concussion without a loss of consciousness to coma. Improved clinical management has increased the survival rate of many who previously would have died from motor vehicle accidents and domestic violence. It is difficult to accurately estimate both the incidence and prevalence as not all those who sustain an injury present to hospital. However, it is estimated that the incidence of traumatic brain injury is approximately 108 per 100,000 people within Australia. More men sustain a traumatic brain injury than women, with young men between the age of 15 and 24 at highest risk. Although one quarter of people who sustain traumatic brain injury in Australia are women, to date discussion surrounding traumatic brain injury has been gender-neutral. As a result, little is known about women’s experience of traumatic brain injury.

It is evident from the authors PhD research, titled “I AM WOMAN – What are the gendered issues for Australian women following traumatic brain injury (TBI)?” that women who sustain traumatic brain injury come from a variety of backgrounds showing that injury does not discriminate based on age, ethnicity, educational background or employment status.

For women such as Annie and Jan (pseudonyms) who have shared their stories in an interview for the research, there may be no visible scarring. Although, the debilitating fatigue, the hypersensitivity to noise and light that they now experience makes completing what were once considered every-day tasks such as working, catching up with friends, shopping or having a haircut an event which requires planning.

For others, such as Rilla limb spasticity, which has required numerous operations, makes walking a challenge and doing her own hair and makeup, which were previously regular parts of her daily routine, an impossible task.

Mel was unsure if an orgasm would bring on a seizure and explains that exploring sexuality, as young woman with a physical disability, was something she had little support in navigating. Sarah explained that her appearance and the way she communicates has changed, since the motor vehicle accident, and she no longer feels comfortable with how she looks and sounds, when meeting new people.

Women who have shared their experience in the PhD research noted above, explained they can sense when they are being judged by others, simply by the way people look at them or disengage from a conversation. They gave examples of this happening when accessing government organisations, legal services, health practitioners and in everyday scenarios like going to the shops or being at the local dog park. The range of impairment that people experience, due to traumatic brain injury, can make it difficult to explain the complexities as each individual experience differs so wildly to another. This complexity must not be inadvertently used to marginalise people in our community by avoiding further discussion.

Women who have sustained a traumatic brain injury as a result of an external force, such as from a motor vehicle accident, an assault, a fall, or sporting injuries are invited to share their experience in an online survey here.

Kate O’Reilly is an Associate Lecturer in the undergraduate and postgraduate nursing program at Western Sydney University. Kate has completed a Bachelor of Nursing, a Master of Clinical Rehabilitation and is now a PhD candidate exploring women’s experience of traumatic brain injury. As a Clinical Nurse Consultant working in rehabilitation for many years, Kate worked in both inpatient and community settings supporting people following catastrophic injury and illness.