It was with great excitement that a group of us joined to contribute to a Brain Injury Professional issue (the official publication of the North American Brain Injury Society (NABIS). This was in the early spring of 2006. We felt like pioneers, raising an issue oft discussed, with rumors aplenty, but with no solid research or literature. We shared a personal story1, wrote about sexuality2 and health concerns of women living with traumatic brain injury (TBI)3. We addressed the concerns of women who care for those living with TBI4 and the effects of chemotherapy for breast cancer on cognition5. We even discussed what menopause has to do with traumatic brain injury6. And we ended with a call to arms, a challenge to engage in research, to include or focus on women living with the consequences of brain injury7. In the fall of 2006 several of the authors presented at the North American Brain Injury Society’s Symposium. The attendance was noteworthy and the buzz was on. And then it slowly died. Three years later, in the fall of 2009, at the urging of Margaret Nosek, the Executive Director of the Center for Research on Women with Disabilities at Baylor College of Medicine, we raised the topic again at NABIS. I would like to think the time slot undermined the attendance --- the last one of the conference. Yet this wobbly start does not diminish the need and the timeliness of the issue.
The world of research about adjustment of women to brain injury (BI) is lagging behind that of disability in general and intellectual disabilities (ID) in particular. A decade ago there was sufficient momentum to include women (or gender) as an independent agenda in the World Health Organization’s conference on healthy aging with intellectual disabilities8. Research priorities included addressing general and gender-specific health issues, disease impact, prevention, life-span effects, general life status, and the socio-economic status and health. Of note is that attention was also drawn to the training of medical practitioners. As a starting point research was to delineate the issues, establish scope and identify more specific research questions. While the focus on aging and intellectual disabilities has generated a strong body of literature, the focus on gender as a factor in the adjustment of this population to aging, has not.
A similar pattern is reflected in the literature on adjustment to physical disabilities. Much of the literature focuses on “generic” adjustment, which de facto means that the majority of the population was male. However, here too the special role that gender plays in adjustment was recognized. In 2004 an executive summary on establishing a research agenda for improving health and wellness of women with disabilities was published by the Center for Research on Women with Disabilities, Baylor College of Medicine in Texas9. Naturally, the very existence of such a center both establishes and instantiates the need. The literature in recent years has reflected a growing awareness to the diverse needs of women with physical disabilities (e.g., adjustment to pregnancy10, race11 as a variable in women’s adjustment to disability, and employment12). And yet women living with traumatic brain injuries, a combination of physical and cognitive (intellectual to a certain extent) have received scant attention. Clearly epidemiology has a role. The mode survivor of a traumatic brain injury is a young man who is often engaged in high risk behaviors. Although prevalence is estimated at 26%13, Nosek3cautions that this may be an underestimation as this estimate is derived from a system that would treat primarily patients with insurance. While men typically engage in high risk behaviors, women are more likely to be victims of motor vehicle accidents or abuse --- domestic or otherwise. But the truth of the matter is that these are largely speculations.
Accurate prevalence is not the only unknown. In a noteworthy effort, Nosek3 collected bits of information by scouring the literature and calling colleagues in order to identify what is known about the health concerns of women with brain injury. A common theme was that the low numbers in the research population made it difficult to employ gender as a variable. Another was that few were, or are, collecting gender-unique data. Even when gender-specific hormones are involved, gender, per se, is not. In a by-product of animal-based research and clinical observation, progesterone has received much attention (Stein6, 14). It differentially plays in memory deficits and in recovery. Specifically, women report less cognitive sequelae than men and may have an overall better prognosis.
Another obvious gender difference is the effect a brain injury has on reproduction and sexuality. Both Nosek3and Trudel2 note the loud silence of the literature regarding female sexuality. Mirroring the non-clinical world, male sexuality is more acknowledged and more comfortably addressed. The silence is perpetuated by the women and in their behaviors. However, this is not paralleled in the clinical world. It is particularly distressing to the parents of a young girl with TBI, who have either moved past the injury or had adapted by desexualizing their child, when sexual aggressiveness and promiscuity is exhibited15. The lack of preparation and tools to deal with the emerging sexuality and its reproductive consequences is stunning. And for the women who are injured in young adulthood and onwards the disparity continues. The dysfunction can be separated into physical problems (lack of energy and pleasure), psychological (changed body image as a result of the physical injury) and educational (ability to satisfy a partner, positioning etc.)3.
Gender also plays a role in access to health care. At its simplest level the desexualization of an individual coping with TBI may have fatal ramifications when annual mammograms or pap smears are not conducted. And if conducted, the physical access to the service – e.g., in case of a mammogram – may not be available to any woman with a physical disability. As Nosek3 points out, women with disabilities are often vulnerable to unemployment, and therefore lack insurance. They are also disproportionately likely to be single and vulnerable to poverty. These are all precursors to poor health -- secondary to both the disability and access to care. This area is unexplored for women with TBI, though there is no reason to expect that, in the United States, they fare any better. Their fate in countries where medicine is universally accessible is also unknown.
Finally, the critical and essential role women play in the home and family may, in and of itself, demand that women with TBI receive more attention. As the social and health coordinators for the family, as the primary caretakers for the children and the elder generation, overlooking women, sidelining them, is very expensive. It leaves children without a primary caregiver and requires an attendant to do the numerous tasks previously juggled by the wife and mother. This may be true even if the woman may have been capable of resuming these tasks had she had appropriate rehabilitation. And yet, until we know what is the most effective rehabilitation plan for women, this will not happen. Associated with a gender-specific holistic approach, vocational rehabilitation and counseling is oft overlooked as women’s earning power is less and because it is believed to not be vital to her sense of self. This bias can also express itself in a failure to prepare young women to enter the job market.
In short, it is time that the community that deals with brain injury (through research, service or care) harness its considerable abilities in the service of identifying and delineating the condition and needs of the other half—of women who are living with brain injury. And if someone is uncertain where to start, the WHO report on intellectual disabilities8 or the research agenda established by the Center for Research on Women with Disabilities9, or our Call to Arms7 are excellent places to start. Or contact me.
Please join us during the International Brain Injury Symposium. We’ll be meeting on March 13, 2010 at 7 am (room to be assigned).
- Vena, M. My life after the injury. Brain Injury Professional, 3, 16-17, 2006.
- Trudel, TM. Women and sexuality post-TBI. Brain injury Professional, 3, 18- 20, 2006.
- Nosek, M. Health concerns of women with Brain Injury. Brain Injury Professional, 3, 28-32, 2006.
- Rocchio, CA. Women caregivers: The long term effects on health and wellbeing. Brain Injury Professional, 3, 8-10. 2006.
- Errico, AL , Trudel, TM. The effects of chemotherapy on cognition in breast cancer survivors: Implications for neurorehablitation. Brain Injury Professional, 3, 12-14, 2006.
- Stein, DG. What does menopause have to do with traumatic brain injury?: The case for progesterone. Brain Injury Professional, 3, 22-27, 2006.
- Gustafson, C, Cooper, M., Vena, M. Participatory Action Research and women living with the consequences of brain injury: A call to arms. Brain injury Professional, 3, 34-35, 2006.
- Walsh P.N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H. (2000). Healthy Ageing – Adults with Intellectual Disabilities : Women’s Issues. Geneva, Switzerland: World Health Organization.
- Center for Research on Women with Disabilities, Baylor College of Medicine. Improving the health and wellness of women with disabilities: A symposium to establish a research agenda. 2004.
- Smeltzer, SC. Pregnancy in women with physical disabilities. Journal of Obstetrics, Gynecologic & Neonatal Nursing, 36, 88-96, 2007.
- Petersen, A. An African-American woman with disabilities: The intersection of gender, race and disability.Disability & Society, 21, 721-734, 2006.
- Smith, LD. Employment status of women with disabilities from the Behavioral Risk Factor Surveillance Survey (1995-2002). Work, 29, 127-135, 2007.
- 2009 TBI Model Systems National Database Update.http://www.tbindsc.org/Documents/2009%20TBIMS%20National%20Database%20Update.pdf. Retrieved on January 16th, 2010.
- 14. Stein, DG, Brailowsky, S., Will, B. Brain Repair. New York, New York: Oxford University Press, USA.
- 15. Sherwin, E, O'Shanick, G J From denial to poster child: Growing past the injury. In M. Ylvisaker (Ed.), Rehabilitation following traumatic brain injury in children and adolescents (pp. 331-343). Newton, MA: Butterworth-Heinemann. 1998.