Advertisement

Being a Woman With Acquired Brain Injury: Challenges and Implications for Practice

Published:February 06, 2015DOI:https://doi.org/10.1016/j.apmr.2014.12.018

      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)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • World Health Organization
        Neurological disorders: public health challenges.
        WHO, Geneva2006
      1. 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.

        • Bell K.R.
        • Pepping M.
        Women and traumatic brain injury.
        Phys Med Rehabil Clin N Am. 2001; 12: 169-182
        • Krieger N.
        Genders, sexes, and health: what are the connections-and why does it matter?.
        Int J Epidemiol. 2003; 32: 652-657
        • Johnson J.L.
        • Greaves L.
        • Repta R.
        Better science with sex and gender: facilitating the use of a sex- and gender-based analysis in health research.
        Int J Equity Health. 2009; 8: 14
        • Colantonio A.
        • Mar W.
        • Escobar M.
        • et al.
        Women's health outcomes after traumatic brain injury.
        J Womens Health. 2010; 19: 1109-1116
        • Ripley D.L.
        • Harrison-Felix C.
        • Sendroy-Terrill M.
        • Cusick C.P.
        • Dannels-McClure A.
        • Morey C.
        The impact of female reproductive function on outcomes after traumatic brain injury.
        Arch Phys Med Rehabil. 2008; 89: 1090-1096
        • Alston M.
        • Jones J.
        • Curtin M.
        Women and traumatic brain injury: “it's not visible damage”.
        Aust Soc Work. 2012; 65: 39-53
        • Sample P.L.
        • Darragh A.R.
        Perceptions of care access: the experience of rural and urban women following brain injury.
        Brain Inj. 1998; 12: 855-874
        • Harris J.E.
        • Colantonio A.
        • Bushnik T.
        • et al.
        Advancing the health and quality-of-life of girls and women after traumatic brain injury: workshop summary and recommendations.
        Brain Inj. 2012; 26: 177-182
        • Farace E.
        • Alves W.M.
        Do women fare worse: a metaanalysis of gender differences in traumatic brain injury outcome.
        J Neurosurg. 2000; 93: 539-545
        • Colantonio A.
        • Harris J.E.
        • Ratcliff G.
        • Chase S.
        • Ellis K.
        Gender differences in self reported long term outcomes following moderate to severe traumatic brain injury.
        BMC Neurol. 2010; 10: 102
        • Howes H.
        • Benton D.
        • Edwards S.
        Women's experience of brain injury: an interpretative phenomenological analysis.
        Psychol Health. 2005; 20: 129-142
        • Kirkness C.J.
        • Burr R.L.
        • Mitchell P.H.
        • Newell D.W.
        Is there a sex difference in the course following traumatic brain injury?.
        Biol Res Nurs. 2004; 5: 299-310
      2. 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.

        • Wright D.W.
        • Espinoza T.R.
        • Merck L.H.
        • Ratcliff J.J.
        • Backster A.
        • Stein D.G.
        Gender differences in neurological emergencies part II: a consensus summary and research agenda on traumatic brain injury.
        Acad Emerg Med. 2014; 21: 1414-1420
        • Hunt M.R.
        Strengths and challenges in the use of interpretive description: reflections arising from a study of the moral experience of health professionals in humanitarian work.
        Qual Health Res. 2009; 19: 1284-1292
        • Denzin N.K.
        • Lincoln Y.S.
        Collecting and interpreting qualitative materials.
        Sage Publications, Thousand Oaks1998
        • Yardley L.
        Dilemmas in qualitative health research.
        Psychol Health. 2000; 15: 215-228
        • Goodley D.
        Dis/entangling critical disability studies.
        Disabil Soc. 2013; 28: 631-644
        • Goodley D.
        • Hughes B.
        • Davis L.
        Introducing disability and social theory.
        in: Goodley D. Hughes B. Davis L. Disability and social theory: new developments and directions. Palgrave Macmillan, New York2012
        • Evans J.
        • Frank B.
        • Oliffe J.L.
        • Gregory D.
        Health, Illness, Men and Masculinities (HIMM): a theoretical framework for understanding men and their health.
        J Mens Health. 2011; 8: 7-15
        • Schneider H.J.
        • Kreitschmann-Andermahr I.
        • Ghigo E.
        • Stalla G.K.
        • Agha A.
        Hypothalamopituitary dysfunction following traumatic brain injury and aneurysmal subarachnoid hemorrhage: a systematic review.
        JAMA. 2007; 298: 1429-1438
        • Lauzier F.
        • Turgeon A.F.
        • Boutin A.
        • et al.
        Clinical outcomes, predictors and prevalence of anterior pituitary disorders following traumatic brain injury: a systematic review.
        Crit Care Med. 2014; 42: 712-721
        • Cernak I.
        • Savic V.J.
        • Lazarov A.
        • Joksimovic M.
        • Markovic S.
        Neuroendocrine responses following graded traumatic brain injury in male adults.
        Brain Inj. 1999; 13: 1005-1015
        • Covassin T.
        • Bay E.
        Are there gender differences in cognitive function, chronic stress, and neurobehavioral symptoms after mild-to-moderate traumatic brain injury?.
        J Neurosci Nurs. 2012; 44: 124-133
        • Lucassen P.J.
        • Pruessner J.
        • Sousa N.
        • et al.
        Neuropathology of stress.
        Acta Neuropathol. 2014; 127: 109-135
        • Gill I.J.
        • Mullin S.
        • Simpson J.
        Psychosocial and psychological factors associated with post-traumatic stress disorder following traumatic brain injury in adult civilian populations: a systematic review.
        Brain Inj. 2014; 28: 1-14
        • Bryant R.
        Post-traumatic stress disorder vs traumatic brain injury.
        Dialogues Clin Neurosci. 2011; 13: 251-262
        • Neysmith S.M.
        • Reitsma-Street M.
        • Baker-Collins S.
        • Porter E.
        • Tam S.
        Provisioning responsibilities: how relationships shape the work that women do.
        Can Rev Sociol. 2010; 47: 149-170
        • Markovits E.K.
        • Bickford S.
        Constructing freedom: institutional pathways to changing the gender division of labor.
        Perspect Polit. 2014; 12: 81-99
        • Vosko L.F.
        • MacDonald M.
        • Campbell I.
        Gender and the contours of precarious employment.
        Routledge, London2009
        • Corrigan J.D.
        • Lineberry L.A.
        • Komaroff E.
        • Langlois J.A.
        • Selassie A.W.
        • Wood K.D.
        Employment after traumatic brain injury: differences between men and women.
        Arch Phys Med Rehabil. 2007; 88: 1400-1409
        • Iaquinta M.
        • Amundson N.E.
        Women's career decision-making after brain injury.
        Can J Career Dev. 2012; 11: 39-48
        • Malacrida C.
        Performing motherhood in a disablist world: dilemmas of motherhood, femininity and disability.
        Int J Qual Stud Educ. 2009; 22: 99-117
        • Caragata L.
        • Cumming S.J.
        Lone mother-led families: exemplifying the structuring of social inequality.
        Sociol Compass. 2011; 5: 376-391
        • Skinner T.
        Women's perceptions of how their dyslexia impacts on their mothering.
        Disabil Soc. 2013; 28: 81-95
        • Payne D.
        • McPherson K.M.
        Becoming mothers. Multiple sclerosis and motherhood: a qualitative study.
        Disabil Rehabil. 2010; 32: 629-638
        • Gill C.J.
        • Sander A.M.
        • Robins N.
        • Mazzei D.
        • Struchen M.A.
        Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners.
        J Head Trauma Rehabil. 2011; 26: 56-68
        • Jackson H.
        • Elizabeth P.
        • Nuttall R.L.
        • Philp E.
        • Diller L.
        Traumatic brain injury: a hidden consequence for battered women.
        Prof Psychol Res Pr. 2002; 33: 39-45
        • Reichard A.A.
        • Langlois J.A.
        • Sample P.L.
        • Wald M.M.
        • Pickelsimer E.E.
        Violence, abuse, and neglect among people with traumatic brain injuries.
        J Head Trauma Rehabil. 2007; 22: 390-402
        • Foster K.
        • Sandel M.
        Abuse of women with disabilities: toward an empowerment perspective.
        Sex Disabil. 2010; 28: 177-186
        • Sherwin E.D.
        • O'Shanick G.J.
        Subject review—the trauma of paediatric and adolescent brain injury: issues and implications for rehabilitation specialists.
        Brain Inj. 2000; 14: 267-284
        • Kontos P.
        • Miller K.L.
        • Colantonio A.
        • Cott C.
        Grief, anger, and relationality: the impact of a research based theatre intervention on emotion work practices in brain injury rehabilitation.
        Eval Rev. 2014; 38: 29-67
        • Gibson B.E.
        • Mykitiuk R.
        Health care access and support for disabled women in Canada: falling short of the UN Convention on the rights of persons with disabilities: a qualitative study.
        Womens Health Issues. 2012; 22: e111-e118
        • Bethune-Davies P.
        • McWilliam C.L.
        • Berman H.
        Living with the health and social inequities of a disability: a critical feminist study.
        Health Care Women Int. 2006; 27: 204-222
        • Celik H.
        • Lagro-Janssen T.A.
        • Widdershoven G.G.A.M.
        • Abma T.A.
        Bringing gender sensitivity into healthcare practice: a systematic review.
        Patient Educ Couns. 2011; 84: 143-149
        • Whalley Hammell K.R.
        • Iwama M.K.
        Well-being and occupational rights: an imperative for critical occupational therapy.
        Scand J Occup Ther. 2012; 19: 385-394
        • Durocher E.
        • Rappolt S.
        • Gibson B.E.
        Occupational justice: future directions.
        J Occup Sci. 2014; 21: 431-442
        • Hankivsky O.
        • Reid C.
        • Cormier R.
        • et al.
        Exploring the promises of intersectionality for advancing women's health research.
        Int J Equity Health. 2010; 9: 5