Abstract
Objectives
To explore the experiences of women with acquired brain injury (ABI) to gain greater insight into their general and sex- and gender-specific health and well-being concerns, and to identify areas for future research.
Design
A qualitative pilot study using interpretive description methodology and a sex-and gender-based analysis of data collected through focus groups.
Setting
Community.
Participants
A sample of survivors, and formal and informal caregivers of women with ABI (N=16).
Interventions
Not applicable.
Main Outcome Measures
Not applicable.
Results
Participants identified significant barriers to achieving optimal health and well-being for women survivors of ABI, including a lack of knowledgeable professionals. We identify 3 interrelated themes: (1) experiences shaped by gender norms and roles; (2) experiences influenced by physiological phenomena, including perceived hormone imbalances; and (3) experiences surrounding interpersonal relationships and sexuality.
Conclusions
Post-ABI care should include education about the influences of sex and gender on health and well-being. Acknowledging the impact of gendered roles, and the broader sociopolitical context of gender and disability, is important to develop appropriate services and supports after ABI. Incorporating effective communication strategies between patient and health care professional can also be a potent rehabilitation strategy.
Keywords
List of abbreviations:
ABI (acquired brain injury), WLE (woman with lived experience)Brain injury is a leading cause of death and disability globally.
1
Historically, research on brain injury has been based primarily on male samples, reflecting higher male incidence rates.2
, Colantonio A, Vander Laan R, Parsons D, Zagorski B. ABI Dataset Pilot Project: phase 1 final scientific report. 2009. Available at: http://www.abiresearch.utoronto.ca/lhin.html. Accessed May 9, 2014.
3
Researchers increasingly acknowledge that both sex (biological construct) and gender (social construct) have a significant effect on health experiences4
and are calling for sex- and gender-based analyses to be a priority in research.5
Yet, despite awareness that biological variances between males and females3
, 6
, 7
and gendered social norms8
, 9
, 10
result in distinct experiences of brain injury for men and women, there is still limited empirical research considering the implications of those differences for women. The need for an approach to study design and analysis that takes these differences into account has been identified among stakeholders.3
, 8
, 10
, 11
, 12
, 13
, 14
Acquired brain injury (ABI) is an “umbrella term” that encompasses a range of brain injuries from both traumatic and nontraumatic causes, and can vary in severity from mild to severe; the consequences of sustaining an ABI include physical, neurocognitive, and/or psychological impairments.
15
Limited research has explored the long-term lived experiences of women with ABI from both survivor and caregiver perspectives, and research focusing specifically on women is scarce in the literature on ABI. This research is necessary to identify disparities in health care policy and service provision, and to develop solutions resulting in better outcomes for women with ABI.Aubut J, Teasell R, Cullen N, Marshall S, Bayley M. Evidence-based review of moderate to severe acquired brain injury. Aug 2013. Available at: http://www.abiebr.com/. Accessed September 22, 2014.
3
, 10
, 16
The objectives of this pilot study were to gain greater insight into the experiences of seeking and maintaining health and well-being among women with ABI through a sample of women survivors, caregivers, and health care professionals, and to identify areas for future research.
Methods
Participants
A convenience sample was recruited through the Brain Injury Association of Canada's website and through word-of-mouth communication. Women were eligible to participate if they were Canadian residents, ≥18 years of age, had sustained an ABI at any age, and were able to communicate in English. Eleven women were recruited, all with non–stroke-related ABI. The average age of these participants was 49 years (range, 20–65y), with an average of 14.9 years' experience living with ABI (range, 5–30y). At the time of the study, 5 women were engaged in volunteer activities, 3 were primarily homemakers, and 1 woman was self-employed (table 1).
Table 1Demographic characteristics of women with lived experience of ABI
| Characteristic | Women With Lived Experience (N=11) |
|---|---|
| Age group (y) | |
| 18–45 | 2 |
| 46–55 | 6 |
| 56–65 | 3 |
| Type of brain injury | |
| Traumatic | 10 |
| Nontraumatic | 1 |
| Years since injury | |
| <5 | 1 |
| 5–10 | 3 |
| 11–20 | 4 |
| 21–30 | 3 |
| Main daily activity(ies) | |
| Paid employment outside the home | 0 |
| Self-employed | 1 |
| Volunteer | 5 |
| Homemaker | 3 |
| Other | 4 |
∗ One participant had a non–stroke-related anoxic brain injury.
† Some participants listed >1 activity.
Eligible caregivers were ≥18 years of age, were able to communicate in English, and provided personal care or health care services for girls or women with ABI who live in Canada. The second stakeholder group consisted of 3 formal and 2 informal caregivers. The formal caregivers were female health care professionals (age range, 20–65y) with a diverse range of years of experience (5–40y). The 2 informal caregivers were a parent and a spouse.
Data collection
This qualitative study used focus groups to explore the experiences of women living with ABI. Two focus group sessions were held with the women, composed of 6 participants in the first session and 5 in the second. The group compositions were based on participants' preference and availability as indicated during the recruitment stage, and in consideration of the distance traveled to allow time for the women to rest before the session. The location was fully accessible. Discussions were conducted by an experienced female moderator. Survivor group discussions lasted 1 1/2 hours, and caregiver sessions were 1 1/4 hours in length. All sessions were audio recorded and transcribed verbatim. See table 2 for the focus group questions.
Table 2Focus group questions and probes for women with lived experience of ABI and caregivers
| Probe | |
|---|---|
| Questions for Women With Lived Experience | |
| Please introduce yourself and tell us why you chose to participate in this discussion. | NA |
| What does “woman's health” mean to you? What is different for a woman with a brain injury? | Aspects of physical, mental, emotional, and social health Changes before and after the injury Any observed differences for those who were injured at an earlier age (little or no “before”) “Different” could encompass any aspect of life and health—this could be a probe for any other issues the participants consider important. |
| Describe your typical day. | NA |
| What are your current health concerns? | Physical, mental health Social concerns—probe for role expectations (family, work, childcare, etc) and identity issues |
| Are you able to get your current health concerns met to your satisfaction? Please explain. | Lack of knowledge of general practitioner/family doctor or other health care providers Negative assumptions about women with disabilities Assumptions of privilege/lack of privilege affecting health-related needs |
| Do the health care providers you are in contact with understand your health concerns? Are they sensitive to your particular life circumstances? | Feelings of bias in service provision Biases related to diversity in abilities, sexual orientation, class, ethnic/cultural heritage, etc. |
| What would make your life more fulfilling? | Use of any technologies to assist with impairments caused by injury Use of technologies more or less than before injury, or in different ways than before injury (Could be smartphones, computers/Internet, mobility technologies) |
| Questions for formal caregivers | |
| Please introduce yourself and briefly explain why you chose to participate in this study. | NA |
| Does your work focus specifically on women's health? | NA |
| What are the consequences for a woman living with acquired brain injury as opposed to a man? | Knowledge about gender differences in outcomes |
| What are some challenges specific to working with female survivors of acquired brain injury across the lifespan (early-middle-late adulthood)? | Physical and mental health Life circumstances Knowledge about reproduction, health screening, menstruation/menopause, etc, for women with an acquired brain injury |
| In your experience providing health care for female survivors, is there a difference between early, middle, and late stages of recovery? | NA |
| What do you think are the barriers to health care that women might experience? | Sensitivity toward differences/diversity such as race/ethnicity, class/income, diverse family composition, sexual identities, age Attitudes about women with disabilities |
| Questions for informal caregivers | |
| Please introduce yourself and briefly explain why you chose to participate in this discussion. | NA |
| Why did you become the caregiver? | Extent of knowledge about caregiving, specifically caregiving for a person with disabilities |
| Are you the sole caregiver? If not, what is your role? Are you also caring for others in the survivor's family or others in your own immediate family? | Burden of caregiving (ie, financial difficulties) if any; amount of time and effort required to provide any type of assistance; nature of relationship regarding care (ie, Who “directs” the day-to-day care needs, survivor or caregiver? What is your responsibility to the survivor?) |
| To what extent do you provide care? | Physical, psychological, or emotional effects on caregiver |
| What is a typical day like for you as the caregiver? | NA |
| What are the barriers, if any, to being a caregiver for a girl or a woman with acquired brain injury? | Attitudes or knowledge of health care professionals Attitudes of the public Social expectations; social supports; financial supports |
| What kinds of things have helped you and your family the most? | NA |
| What do you, as a caregiver for a female survivor, want to know more about? | Possible research questions/research agenda |
Abbreviation: NA, not applicable.
Data analysis
The analysis was conducted in keeping with the principles and techniques of interpretive description methodology, a qualitative research approach aligned with a constructivist and naturalistic orientation to inquiry, to construct knowledge useful in clinical health care settings.
17
Transcripts were analyzed by members of the research team. The analysis consisted of a qualitative process of attaching descriptive codes to segments of text within and across the focus groups. These codes were reviewed, and relationships and patterns within the codes allowed us to group them into categories based on commonalities. Topic-oriented categories were further refined and formulated into fewer analytical categories related to health and well-being and clinical implications through an inductive, iterative process.17
, 18
Triangulation of data was used to enhance trustworthiness of the findings: information was sought from participants across different stakeholder groups to identify and verify patterns of convergence. Triangulation has been identified as a particularly effective means of gaining an inclusive and comprehensive understanding of a topic,
19
and is considered an integral component of interpretive descriptive methodology.17
Ethics approval was provided by the Toronto Rehabilitation Institute-UHN.
Results
Three key themes emerged from the analysis: (1) an ideal woman—experiences shaped by gender norms and roles; (2) a body unfamiliar—experiences influenced by physiological phenomena; and (3) a new sexuality—experiences regarding interpersonal and sexual relationships. These themes are discussed below; participant quotes are from a caregiver (C) or a woman with lived experience (WLE).
An ideal woman
The first theme highlights the intersection of disability and gender and its impact on social interactions, family relations, gender identity, and gendered role expectations. Participants agreed that being a woman with ABI affects not only the way others perceive them, but also how social interactions are performed. Interpersonal interactions are shaped by culturally defined and entrenched ideals of women's physical appearance and expected behavior, and by widespread stigma toward disability within Western societies. To illustrate, a caregiver described patients' experiences of not being acknowledged or heard.
I think that women get poorer … health care sometimes because they're discounted by male doctors. And I think that particularly happens in brain injury. It's easy to discount a woman. It's not so easy to discount a man. (C1)
Participants discussed being patronized by family members and health care professionals. As 1 woman (WLE1) stated, “What we have to say we have to say carefully … in a way that they're going to listen to us, and not just patronize us.” Identifying as a woman with a disability increased their vulnerability in a culture where women are already devalued.
I think that in society women have a problem being taken as seriously as men. It's still very much a man's world…. Being a woman with a brain injury trying to be taken seriously with a bunch of men … you can just forget it. (WLE2)
And then if I have a male doctor he—if I ask his advice or something [from] him … I find him very degrading. He looks at me and it's like “Oh, she don't know what she's talking about.” (WLE3)
Western sociocultural ideals of womanhood include expectations of having a feminine appearance and performing caregiving and other domestic tasks. These gendered responsibilities resulted in distress for the survivors. Participants highlighted how these gendered expectations of appearance and responsibilities had a negative impact on the health and well-being of women with ABI. Some participants struggled with maintaining these expectations, reporting difficulties with maintaining basic hygiene, getting dressed, and applying cosmetics, and discussed how these activities were linked to self-confidence.
Dressing … we've got to look sexy … and it's hard to put on makeup.… I can't put it on. (WLE4)
I mean as women, even if we didn't buy into it, we've been indoctrinated to believe that our looks are something very valuable to us. (C1)
This caregiver further commented that in long-term care, bathing often only occurred once a week.
That's not appropriate to anybody … but to women in particular … by the way we're constructed we need to bathe more. Or you get … all kinds of issues. (C1)
Participants spoke about the impact their injury had on family relationships. The complexity of domestic work and its many tasks require planning, management, and execution skills. WLEs identified barriers to resuming motherhood immediately after rehabilitation and expressed grief and guilt over the loss of their abilities to do so.
You come out of the hospital and everything and with the injury, and you're just trying to cope with the kids. And trying to cope with everything. With the house. With making meals. With trying to clean the house. With trying to cope with life … It's too much. (WLE5)
I find my ability to keep up with the fast pace of just doing things in the home [is compromised]. Especially organizing, like preparing your meals, trying to follow a recipe … Hosting parties—oh yeah. Those days are gone. (WLE6)
Participants expressed concern that the complexity of these roles and the social pressure to fulfill them were not appreciated.
When a woman sustains brain injury maybe her role before … was a mother … a homemaker. But that's not seen as a viable vocational position, so there's not as much rehab, rehabilitation focus on getting her back into the mother role as there would be to develop a work program to get her working back in the force and to contribute economically speaking. (C3)
WLEs also expressed frustration over loss of jobs and income, and an accompanying loss of identity, control, and independence.
After I got hurt I lost everything. I haven't earned a dime since the time I got hurt. I have been reduced because of bills to social assistance and— (WLE7)
—And begging. (WLE8)
—Yeah. And you feel like you're always dependent on somebody else. And you hurt inside and you become frustrated. And I think that … destroys your health. (WLE7)
And lots of women don't have a pension plan.… And if they're dependent on having to go on welfare … they will have to spend what little pot of money they have before they can get welfare. (C1)
A likelihood of insufficient support from family members was also noted.
And if the woman has lost her … main support—her husband, her kids—you know she's not the same person at all. There's nobody to fight for the woman. (C4)
A body unfamiliar
The second emergent theme highlights physiological changes experienced postinjury. Changes such as chronic fatigue and pain were most commonly experienced and were often intensified during menstruation. Consequent effects of perceived hormonal imbalances surfaced as changes in mood, cognitive ability, attention span and energy levels, and experiences of more intense “premenstrual syndrome” (PMS). Participants agreed that these physiological changes interfered with optimal functioning and quality of life.
When asked what was different for women after having a brain injury, participants recollected changes occurring around the menstrual cycle, presently or in the past. WLEs spoke of “brain fog” occurring just before or during menstruation. They describe the experience as a temporarily increased loss of attention span and decreased energy levels, requiring prolonged rest.
I probably suffer more PMS than I've ever done… I see the difference in how … I'm kind of disconnected, that brain fog around my cycle time. (WLE9)
I get a lot of migraines, really bad migraines. So I know like for me … when you get your period it … triples. (WLE5)
WLEs identified a need for information about potential changes to their menstruation patterns, noting that this gap intensified feelings of isolation and uncertainty. One woman commented, “my god … that would have been … helpful to know … when I was having them”. (WLE8)
Unpredictable fluctuations in mood and energy levels presented barriers to maintaining a balanced lifestyle.
I find—like there is no specific typical day…. I find it … I find it very hard to do what you used to be able—or what I used to like to do. (WLE3)
Some people who don't have brain injuries have the reserve, even though they're tired, to keep going. When you have a brain injury, you hit a brick wall…. It's like a fuel tank. There's no reserve in that fuel tank. (WLE9)
A new sexuality
The last theme explored the experiences of WLEs with interpersonal relationships, intimacy, and sexuality. Some of the mature women identified differences in their intimate relationships.
And by talking we decided, how important is sex? If you don't have any feeling all down your right side, is there any point in having sex? You're doing it for his benefit, not for your own…. And then we think that companionship and doing things together is far more important than some of these other things. (WLE10)
I've never been where I wanted to be left alone. Now I crave that time. (WLE9)
Participants also spoke about the impact the injury had on their sexual behavior: for some it increases sexual libido or decreases inhibitions.
But every time I did find somebody who would listen, I would sleep with him. Or want to sleep with him. So … I didn't want to find too many of those people. (WLE8)
It's really hard to explain to the mother [of a brain-injured daughter] that the promiscuity may be a consequence of the injury and mental health versus this is who the person is. (C1)
A serious concern was the potential for an increased risk of sexual abuse or being taken advantage of for women survivors of ABI. Participants were aware of an increased vulnerability and discussed the risks and lack of safety.
But I withdraw and say you can do whatever you want to. I mean, yeah, hit me again and I'll just, yeah, you can take all my clothes off and you can hit me. (WLE8)
And I know that the vulnerability of a woman is already higher than a man. I don't have the actual stats for that but we know that in general society. And so a woman who has impulse control [problems and] is hypersexually aroused, you're not going to find a man that will often say no. (C3)
Discussion
This study provided insight about the gendered ramifications of inner and external resources available for women with ABI, from the perspectives of WLEs and caregivers. Themes that emerged were (1) experiences influenced by physiological changes after ABI; (2) experiences shaped by the interaction of gender roles and disability; and (3) altered sexual and intimate relationships. While these themes were presented as discrete, we suggest that the experience of disability is found at the intersection of physiological and social experiences, reflecting current disability research that situates disability as both a physical and social phenomenon.
20
, 21
In this article, we address a research gap by investigating the lived experience of women with ABI, and we consider how the social construct of gender contributes to their experiences of living with ABI, noting that gender roles and norms affect men's health as well.22
Experiences influenced by physiological changes
WLEs reported difficulty in their everyday lives because of fluctuations in cognition, memory, mood, attention span, and energy, which attenuated their capacity to perform meaningful activities on returning to the community and many years after. Participants also reported heightened anxiety, amplified discomfort during menstruation, altered emotive reactions, and chronic pain and fatigue many years after the injury.
Neuroendocrine dysfunction is a well-known outcome after ABI that has considerable physical and mental health consequences (eg, see systematic reviews by Schneider
23
and Lauzier24
and colleagues), including hormonal changes.6
, 16
, 25
, 26
While sustaining an ABI could cause direct damage to regions of the brain that regulate neuroendocrine activity, endocrine imbalances are also caused indirectly, from posttraumatic stress or from common activities that become a source of chronic stress after ABI.16
, 27
Survivors of brain injury could experience many stressful situations,28
, 29
making it difficult to determine whether the imbalance results from a single or a combination of factors, including direct damage, stress, age, and other physiological and social factors. Thus, understanding the relationship between brain injury, stresses, and the complex activity of the neuroendocrine system is critical to developing effective interventions.In our study, several of the women struggled with fulfilling mothering/caregiving and other domestic roles, which typically fall within the domain of women's unpaid labor.
30
, 31
Moreover, the women in our study, with 1 exception, did not have paid employment, and several did not benefit from a second income from a spouse or partner. Change of work status is common after TBI; however, the nature of paid work is highly gendered (eg, lack of pay equity, gender imbalance in casual and temporary work32
), and this can impact the likelihood of returning to work and of receiving sufficient benefits postinjury, which is dependent on lifetime cumulative earnings. Other researchers likewise found that gender plays a role in employment status after TBI.33
, 34
The lack of income and change in employment status were clearly sources of stress for the WLEs in this study.Gender roles and disability
Another theme was the lack of attention given to complex parenting and domestic roles during rehabilitation. Western notions of the “ideal woman/mother” and its effects on women's physical and mental health and well-being are well documented: women are considered to be the “natural” parent to provide all aspects of childcare.
35
, 36
Indeed, the very act of mothering can bring about external validation. By engaging in motherhood, a disabled woman can achieve the feminine ideal.35
The survivors discussed tremendous stress and frustration trying to fulfill complex tasks involved in these roles, and in balancing these tasks with self-care. Research on parenting experiences of women with chronic illness shows that these women hold themselves accountable to a standard of parenting expected of “ideal” (eg, nondisabled) women and are less likely to achieve it.37
, 38
Our study supports and extends these findings, highlighting the need to redress the absence of domestic and parenting roles as legitimate rehabilitation goals, and examine the attitudes of rehabilitation professionals toward women with ABI, and more generally, of the oftentimes uncritical acceptance of social norms about gender and ability.Intimacy and sexuality
Psychological and physical barriers to intimacy and altered sexual behaviors were identified in this study as having a significant impact on relationship stability and familial supports. Gill et al
39
found that interpersonal communication and familial and spousal support are integral to reestablishing intimacy after TBI. Echoing one of our participants, they also found that the nature of intimacy became more complex among mature survivors and their partners, with less focus on sexuality. Some of the participants in our study developed new and healthy perspectives on meaningful and intimate interpersonal relationships. However, participants were aware of the heightened risk of physical and sexual abuse, a finding that adds to the current literature.40
, 41
, 42
Given this knowledge, it is of concern that rehabilitation staff rarely broach with ABI patients issues of interpersonal relationships, intimacy, and sexuality.43
Intimacy and sexuality should be a focus of educational initiatives in neurorehabilitation, with particular attention paid to the way “emotion work” within relationships is performed across genders and other social locations.44
Research and clinical implications
Our findings support the need for professional education to effectively address the needs of women with ABI; some immediate practices that could improve the health and well-being of women living with ABI follow. Even so, it is striking that so little has improved for women with brain injuries, and for women with disabilities in general, despite knowledge that women have long experienced similar obstacles.
9
, 45
, 46
Open and transparent communication between women survivors, family members, and health care professionals can be beneficial in the rehabilitation process. Implementing patient-centered practice and educating health care professionals on effective communication strategies, gender sensitivity, and diversity of women and their roles can promote a greater understanding of female patients.
47
Rehabilitation practitioners should be trained to discuss intimacy and sexuality with patients as directly as they address physical and cognitive functioning. Furthermore, women would benefit from education on the physiological consequences of ABI to know what they might experience. Attention should also be paid to matters such as returning to unpaid and paid work34
and maintaining physical appearance and personal hygiene. In the longer term, health care professionals should lobby for unrestricted, or at least improved, access to resources that lead to the health and well-being of their patients.48
, 49
Study limitations
The WLEs in this study represented a small sample of mostly mature women from across Canada, the majority many years postinjury, who could travel to the study location. Also, our study sample lacked representation from different racial/ethnic/cultural backgrounds, sexual orientations, and gender identities among the WLEs. Although the women differed in household income and social status, we did not draw on this information in our analysis. Research with a more diverse sample could allow for intersectional analysis that considers how multiple axes of marginality affect women's health and well-being after ABI.
50
The sample sizes for formal and informal caregiver groups were small, but their contributions strengthened the trustworthiness of the data because the participants' perspectives across groups often converged; however, future studies with a larger sample of caregivers are needed.Conclusions
Our findings support the need to educate providers about the influences of sex and gender on health and well-being after ABI. Acknowledging the impact of gendered roles, and the broader sociopolitical context of gender and disability, is important to develop appropriate services and supports after ABI. This unique qualitative pilot study provided insight about the gendered ramifications of resources available for women with ABI, from the perspectives of WLEs and care providers. Future research on women with lived experience of ABI that includes a diverse sample of women across age, ethnicity/race, sexual and gender identities, and geographic regions, and uses an intersectional analytic lens, could provide valuable insight for training rehabilitation and health professionals.
Acknowledgments
We wholeheartedly thank Jo-Ann McInnis and H. Jane Warren, MBA, for reviewing earlier versions of this manuscript.
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Article Info
Publication History
Published online: February 06, 2015
Footnotes
Supported by the Ontario Neurotrauma Foundation and the Toronto Rehabilitation Institute through a grant from the Ontario Ministry of Health and Long-Term Care; the Canadian Institutes of Health Research Chair in Gender, Work and Health (grant no. CGW-126580); and the Saunderson Family Chair in Acquired Brain Injury Research at the Toronto Rehabilitation Institute-UHN.
Publication of this article was supported by the American Congress of Rehabilitation Medicine.
Disclosures: none.
Identification
Copyright
© 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
