The health needs of women with disabilities have been ignored in the past, but that no longer seems to be true. The resources included here cover interrelated topics such as health and aging and health care access/barriers for women with different disabilities as well as articles concerning adjustment to disabilities such as traumatic brain injury and spinal cord injury and some resources that are specific to women’s health issues in general. And while some articles here are concerned with reproductive health, see also the section on motherhood and reproductive rights.
Ahmed, N. U., Smith, G. L., Haber, G., & Belcon, M. C. (2009, January-February). Are women with functional limitations at high risk of underutilization of mammography screening? Women’s Health Issues, 19(1), 79-87.
Objectives: Women with functional limitations face obstacles in adhering to established mammography guidelines owing to personal factors and barriers within the health care system. Whereas some studies have focused on either physical or cognitive limitations that correlate with lower rates of cancer screening, this study examined multiple functional limitations (physical, psychological, and sociability) and mammography screening.
Methods: Data from the 2000 National Health Interview Survey were analyzed for 9,505 women aged ≥40 years. We hypothesized that women with functional limitations (physical, psychological, and/or sociability) are less likely to receive screening mammography. Access variables (insurance coverage and usual source of health care) and utilization variables (physician contact and receipt of clinical breast examination) were included. Using multiple logistic regression (MLR), we estimated the relative contribution of functional limitations on mammography use after accounting for sociodemographic characteristics and confounding variables.
Results: An estimated 34.6% of women had physical limitations, 16.1% sociability limitations, and 8.1% psychological limitations. After controlling for all other variables, MLR analysis indicated that women with moderate or severe sociability limitations were less likely than their unimpaired counterparts to utilize mammography (odds ratio [OR], 0.62; 95% confidence interval [CI], 0.48–0.81). Interestingly, women with severe physical limitations were more likely than physically able women to utilize mammography screening (OR, 1.28; 95% CI, 1.07–1.53). Women with no insurance, no usual care, and no doctor’s visit within the past year were substantially less likely to use mammography screening.
Conclusions: Sociability limitations, lack of access to health care, and limited regular checkups played significant roles in underutilization of screening mammography.
Anderson, D. J. (2002, July-August). Health, age, and gender: how do women with intellectual disabilities fare? In M. P. Janicki & P. McCallion (Eds.), Aging people with intellectual disabilities: Dealing with the challenges of older age, Part II [Special issue]. Journal of Gerontological Social Work, 38(1/2), 137-160.
The 1994-1995 Disability Supplement to the National Health Interview Survey (administered to a representative sample of the U.S. population) was analyzed for women age 30 and older with intellectual disabilities (ID), developmental disabilities (DD) or both, in order to describe their functioning as they aged in the community. Definitions of ID and DD consistent with professional and legal standards were developed and adapted to the NHIS-D questions. An estimated .56% of the approximately 77 million civilian, noninstitutionalized, women age 30 and older in the United States have one of these disabilities. Compared with women in general, women with these disabilities had negative perceptions of their health status, particularly women with DD and health indicators tended to support their perceptions. Most were independent in activities of daily living (ADL), but instrumental activities of daily living (IADLs) posed more of a challenge, and limitations in major activities were common as was a high rate of distress and psychosocial difficulties. The findings suggest that the needs of these women are multiple in nature, involving economic resources, psychological support, possibly work assistance (e.g., job placement), education, social and family supports, in addition to rehabilitative supports more directly linked to specific disabilities.
Arbuckle, K. (Buchanan, J., illus). (2004, April). Women first: Breast health for women with developmental disabilities. Laramie, WY: Breast Health for Women with Disabilities, Wyoming Institute for Disabilities, University of Wyoming. Retrieved January 22, 2005 from http://wind.uwyo.edu/breasthealth/handbook.pdf
“This guide has been developed specifically to help self-advocates learn basic breast health information. Care providers are encouraged to use this guide when working with women with developmental disabilities when discussing issues related to breast self exams, breast cancer, regular visits to their health care providers, and staying healthy in general.”
Separate copies of the Breast Health Calendar, a handout of tips for care providers and an evaluation form for the manual can be found at: http://wind.uwyo.edu/breasthealth/handbook.htm
Basson, R. (1998). Sexual health of women with disabilities. Canadian Medical Association Journal, 159, 359-362.
“Along-term disability can have a profound impact on a woman’s innate sense of sexuality, sexual function and, occasionally, fertility. Research findings suggest that some 14% to 20% of women over 15 years of age have a long-term disability;1 this means that most physicians will be involved in the care of physically or mentally challenged women. Nevertheless, there is little in the medical literature about sexuality and disability, and many medical school curricula have only recently begun to address the issue in any detail” (p. 359).
Beatty, L. A. (2003). Substance abuse, disabilities, and Black women: An issue worth exploring. In M. E. Banks, & E. Kaschak (Eds.), Women with visible and invisible disabilities: multiple intersections, multiple issues, multiple therapies, Part II [Special issue]. Women & Therapy, 26(3/4), 223-236.
This paper presents information on the incidence and causes of substance abuse and disabilities in Black women, identifying common problems and risks. Drug abuse is technically a disability; however, there is little in the literature that jointly addresses issues of drug addiction and disability. Black women are the second largest group of women with disabilities and one of the largest groups to suffer the consequences of drug use such as HIV/AIDS, a rising source of disability highly correlated with drug abuse. Psychiatric co-morbidities related to disabilities and drug abuse are identified. Implications for research and treatment are discussed.
Becker, H., Stuifbergen, A. K., & Gordon, D. (2002, April). The decision to take hormone replacement therapy among women with disabilities. Western Journal of Nursing Research, 24(3), 264-281.
Whereas making decisions during menopause can be challenging for all women, those with physical impairments face special issues with respect to menopause in general and hormone replacement therapy (HRT) in particular. In this correlational study, the authors explored the factors such women consider when making decisions about HRT. One hundred sixty-seven women with physical impairments throughout the United States completed surveys concerning their attitudes and knowledge about HRT. Approximately half the menopausal women were currently taking HRT. The strongest predictor of HRT use was women’s perceptions of their health care providers’ opinions about their taking HRT, combined with their motivation to comply with the provider’s recommendation. This finding points to the significant role that nurses and other health care providers play in assisting women to make informed health care choices during menopause.
Beery, T., Sommers, M. S., & Hall, J. (2002). Focused life stories of women with cardiac pacemakers. Western Journal of Nursing Research, 24(1), 7-27.
Biotechnical devices such as cardiac pacemakers are implanted into people to manage a range of disorders, yet comparatively little is known about the emotional impact of this experience. Women may have a unique response to implanted devices due to cultural messages about the masculinity of technology. In this qualitative study using Hall’s focused life stories design, 11 women from teenagers to elders with permanent cardiac pacemakers were asked to describe their experiences using semistructured interviews. The themes that emerged are relinquishing care, owning the device, experiencing fears and/or resistance, imaging the body, normalizing, positioning as caretaker, finding resilience, and sensing omnipotence. Understanding what it means for women to live with an implanted biotechnical device may facilitate planning interventions to support their psychological and physiological health. Effective pacemaker function may depend, in part, on recipients’ successful emotional attachment to the device.
Begum, N. (1996). General practitioners’ role in shaping disabled women’s lives. In C. Barnes & G. Mercer (Eds.), Exploring the divide: Illness and disability (pp. 157-172). Leeds: The Disability Press. Available online: http://www.leeds.ac.uk/disability-studies/archiveuk/Begum/Chap9.pdf
“Environment can be defined as embracing most aspects of the society people live in, such as physical features, political/economic structures and the social climate within which people function. Alternatively, the term environment may be used to identify particular features of the world, this is perhaps most commonly done when describing the physical composition of the world people live in. In order to explore the divide between illness and disability I will adopt a broad definition of environment, but primarily focus on the interaction between disabled women and GPs.”
Benedict, R. H. B., Wahlig, E. L., Topciu, R. A., Englert, J., Schwartz, E., b, Chapman, B., Weinstock-Guttman, B., & Duberstein, P. R. (2009, February). Personality traits in women with multiple sclerosis: Discrepancy in patient/partner report and disease course, Journal of Psychosomatic Research, 66(2), 147-154.
Objective: Patients diagnosed with multiple sclerosis (MS) are believed to undergo personality changes, which could have implications for how they perceive themselves and are perceived by others. We endeavored to examine the extent to which patients’ self-perceptions are congruent with how they are perceived by significant others across five trait domains as demarcated by the well known Five-Factor Model (FFM).
Methods: The NEO Five-Factor Inventory (NEOFFI) (Costa and McCrae, 1992) was administered to women with MS (n=70) and their spouses or partners. Pearson correlations and general linear models (GLMs) were employed to test for differences between patient self-reports and partner reports of FFM traits.
Results: Correlation analyses revealed good correspondence between patient and partner NEOFFI data in relapsing-remitting MS patients, but not secondary progressive patients. There was no significant correlation among progressive course patients for all NEOFFI domains, except Agreeableness. GLMs revealed significant differences where patients rated themselves higher than their partners rated them in Extraversion and Openness.
Conclusion: These discrepancies in the way patients and partners view patient personality are probably multidimensional and may have neurological and/or psychological causes. The direction of the discrepancies are consistent with some prior research suggesting MS, which is a disease affecting both the cerebral white and gray matter, may give rise to lowering in self awareness. Conversely, patients may be finding emotional or personal benefits in their response to the disease unbeknownst to partners.
Besculides, M., Zaveri, H., Farris, R., & Will, J. (2006, January). Identifying best practices for WISEWOMAN Programs using a mixed-methods evaluation. Preventing Chronic Disease, 3(1), 1-9. Retrieved June 10, 2007 from http://www.cdc.gov/pcd/issues/2006/jan/pdf/05_0133.pdf.
Introduction: Recommendations on best practices typically are drawn from unique settings; these practices are challenging to implement in programs already in operation. We describe an evaluation that identifies best practices in implementing lifestyle interventions in the Center for Disease Control and Prevention’s WISEWOMAN program and discuss our lessons learned in using the approach.
Methods: We used a mixed-methods evaluation that integrated quantitative and qualitative inquiry. Five state or tribal WISEWOMAN projects were included in the study. The projects were selected on the basis of availability of quantitative program performance data, which were used to identify two high-performing and one low-performing site within each project. We collected qualitative data through interviews, observation, and focus groups so we could understand the practices and strategies used to select and implement the interventions. Data were analyzed in a multistep process that included summarization, identification of themes and practices of interest, and application of an algorithm.
Results: Pilot testing data collection methods allowed for critical revisions. Conducting preliminary interviews allowed for more in-depth interviews while on site. Observing the lifestyle intervention being administered was key to understanding the program. Conducting focus groups with participants helped to validate information from other sources and offered a more complete picture of the program.
Conclusion: Using a mixed-methods evaluation minimized the weaknesses inherent in each method and improved the completeness and quality of data collected. A mixed-methods evaluation permits triangulation of data and is a promising strategy for identifying best practices.
Bethune-Davies, P., McWilliam, C., & Berman, H. (2006, March). Living with the health and social inequities of disability: A critical feminist study. Health Care for Women International, 27(3), 204-222.
Clients living at home with chronic disabling conditions together with their caregivers, service providers, and policymakers face major challenges in optimizing health care. In this critical feminist interpretive study we examined the experiences of women receiving home care for chronic disabling conditions. Five themes emerged: struggling with the embodied limitations of disabling chronic conditions; actively seeking health; struggling with service limitations; seeking ways to manage; and living with isolation and marginalization. Having done this study, we learned that home care services do not always contribute sufficiently to the overall health and well-being of women living with chronic disabling conditions and, in fact, may negatively impact upon their health.
Biswas, M., Whalley, H., Foster, J., & Friedman, E. (2005). Women with learning disability and uptake of screening: Audit of screening uptake before and after one to one counseling. Journal of Public Health, 27(4), 344-347.
Background: This study investigates the breast and cervical screening status of women with moderate to severe learning disability and whether uptake could be improved by one to one counselling.
Methods: An audit of screening uptake of women in contact with the National Health Service (NHS) learning disability service within the eligible age groups for breast and cervical screening before and after one to one counselling by a learning disability team nurse.
Results: Of the eligible 48 women, 37 (77 per cent) had undergone breast screening indicating that uptake was excellent and comparable to the average national and local uptake. As for cervical screening, of the 160 women who were identified as eligible and were contactable, only 26 (16 per cent) were having regular smear tests. At the end of the project, which involved one to one counselling by the nurses to encourage uptake, nine additional women underwent smear tests bringing the uptake rate to 22 per cent. For the remaining 96 women (60 per cent) the reasons at the time for non-uptake were recognized as appropriate.
Conclusions: Although the uptake of breast screening was found to be good, cervical screening uptake for women with learning disability was low and remained low after a supportive intervention designed to increase uptake. The greater acceptability of breast screening in women with moderate to severe learning disability compared to cervical screening has been confirmed.
Blanchard, J. C., & Hosek, S. D. (2003). Financing health care for women with disabilities [RAND White Paper]. Pittsburgh: RAND. Available: http://www.rand.org/pubs/white_papers/2005/WP139.pdf.
Women with disabilities, a large and growing segment of the U.S. population, are as a group underserved when it comes to the health care services that are appropriate to their needs. Although these needs are well documented, the barriers that may prevent these women from obtaining appropriate care are less understood. This paper describes the major financial issues affecting access to appropriate primary health care for women with disabilities and presents recommended strategies for effectively addressing those issues. The authors find that while the health care financing system explicitly reimburses for specialty care for a disabling condition, it ignores the substantial additional equipment and staffing needed to provide appropriate general health care for women with disabilities. New approaches for financing health care for this population should be considered, along with a careful assessment of the cumulative cost effects of any new approach on the federal Medicare and Medicaid budgets.
Bondy, C. A. (2007). Care of girls and women with Turner Syndrome: a guideline of the Turner Syndrome Study Group. The Journal of Clinical Endocrinology & Metabolism, 92(1), 10-25.
Objectives: The objective of this work is to provide updated guidelines for the evaluation and treatment of girls and women with Turner syndrome (TS).
Participants: The Turner Syndrome Consensus Study Group is a multidisciplinary panel of experts with relevant clinical and research experience with TS that met in Bethesda, Maryland, April 2006. The meeting was supported by the National Institute of Child Health and unrestricted educational grants from pharmaceutical companies.
Evidence: The study group used peer-reviewed published information to form its principal recommendations. Expert opinion was used where good evidence was lacking.
Consensus: The study group met for 3 d to discuss key issues. Breakout groups focused on genetic, cardiological, auxological, psychological, gynecological, and general medical concerns and drafted recommendations for presentation to the whole group. Draft reports were available for additional comment on the meeting web site. Synthesis of the section reports and final revisions were reviewed by e-mail and approved by whole-group consensus.
Conclusions: We suggest that parents receiving a prenatal diagnosis of TS be advised of the broad phenotypic spectrum and the good quality of life observed in TS in recent years. We recommend that magnetic resonance angiography be used in addition to echocardiography to evaluate the cardiovascular system and suggest that patients with defined cardiovascular defects be cautioned in regard to pregnancy and certain types of exercise. We recommend that puberty should not be delayed to promote statural growth. We suggest a comprehensive educational evaluation in early childhood to identify potential attention-deficit or nonverbal learning disorders. We suggest that caregivers address the prospect of premature ovarian failure in an open and sensitive manner and emphasize the critical importance of estrogen treatment for feminization and for bone health during the adult years. All individuals with TS require continued monitoring of hearing and thyroid function throughout the lifespan. We suggest that adults with TS be monitored for aortic enlargement, hypertension, diabetes, and dyslipidemia.
Boston’s Women’s Health Book Collective. (1998, May). Our bodies, ourselves for the new century (Rev. & Updated Ed.). New York: Touchstone.
When Our Bodies, Ourselves was first published in 1969 there was practically no information easily available about women’s health issues. The first publication of this book encouraged many women to explore the health issues most important to them. Our Bodies, Ourselves for the New Century continues to reflect the vital health concerns of women of diverse ages, ethnic and racial backgrounds and sexual orientations. In these pages, women will find new information, resources (including Internet resources) and personal support for the decisions that will shape their health–and their lives. Topics explored range from living a healthy life, to relationships, sexuality, childbearing, and growing older, to dealing with the medical system and organizing for change. This is a book for women of all generations to use, to rely on, and to share with others.
This newest edition of Our Bodies, Ourselves continues the inclusion of women who have disabilities and a disability perspective is presented in most chapters. Our Bodies, Ourselves is a book on women’s health issues for all women. This book should serve as a model as to how other generic books on women’s health, education, sexual abuse, and so on, can include disability issues as an integral part of the topic. Although the authors should be praised for including women with disabilities it should also be mentioned that some issues of importance to women with disabilities get much less attention than needed. Examples of this are the problems some disabilities can cause during pregnancy and childbirth. Excerpts and other information can be found on the book’s companion web site at http://www.ourbodiesourselves.org/
Bremer, K., Cockburn, L., & Ruth, A. (2010, March). Reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon. International Journal of Gynecology & Obstetrics, 108(3), 211-213.
Objective: To investigate the reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon.
Methods: Data were collected in the city of Bamenda through semi-structured interviews with women with mobility impairments, discussions with healthcare providers, hospital observations, and field notes. Interviews were transcribed verbatim, coded and analyzed for key themes.
Results: The 8 participants included in the study had limited understanding of reproductive health and many had not received basic reproductive health education. Unplanned pregnancy was common and pregnancy was often feared. Respondents reported both positive and negative responses from family, community members, and healthcare workers regarding reproductive health. Most healthcare centers were physically and financially inaccessible.
Conclusion: Women with disabilities need greater education on reproductive health and improved access to health care.
Brett, K. M., & Hayes, S. G. (2004, August). Women’s health and mortality chartbook. Washington, DC: DHHS Office on Women’s Health.
The Women’s Health and Mortality Chartbook is a statistical resource on women’s health in each of the states, the District of Columbia, and Puerto Rico. The chartbook, produced by the U.S. Department of Health and Human Services’ Office on Women’s Health, was developed to provide a collection of current state data on critical issues relevant to women. A total of 27 featured health indicators highlight some key women’s-health-related issues that are measured regularly at the state level. The chartbook contains U.S. maps for each featured health indicator; women’s health profiles for each of the 52 geographic areas presented; and information on data sources, terminology, and analytic issues. It is intended for use by policymakers and program managers at the federal and state levels to identify key health issues in each state, and it may also stimulate readers to ask new questions.
The chartbook is available online at http://www.cdc.gov/nchs/datawh/statab/chartbook.htm. Data files may be downloaded from the National Center for Health Statistics’ web site at http://www.cdc.gov/nchs/healthywomen.htm. The complete data collection is also available on CD-ROM.
Broderick, L. E., & Krause, J. S. (2003). Breast and gynecologic health-screening behaviors among 191 women with spinal cord injuries. Journal of Spinal Cord Medicine, 26(2), 145-149.
Study examined the preventive health behaviors of women with spinal cord injury (SCI) by comparing the frequency of mammograms or Pap smears between women with SCI and women in the general population, and among women with SCI as a function of racial/ethnic status and socioeconomic status (income and education level). Participants were interviewed by telephone. Overall, women with SCI were less likely to obtain routine health screening than women in the general population. However, no differences were found among study participants as a function of race/ethnicity or socioeconomic status.
Broughton, S. (2002, August). A review of the literature: Interventions to maximize capacity to consent and reduce anxiety of women with learning disabilities preparing for a cervical smear test. Health Services Management Research, 15(3), 173-185.
Due to the complex nature of the cervical screening for women with learning disabilities, this literature review has several different strands. The aim of which is to give a general overview of the literature available about women with learning disabilities and cervical screening. Discussing key issues in relation to uptake, access and risk factors associated with cervical screening. The role of the learning disability nurse in supporting access to cervical screening services within primary care will be explored. The notion that anxiety and a woman’s capacity to consent impacts on her accessing cervical screening services and ultimately undergoing a cervical smear test, will be examined. Relaxation techniques with regard to ascertaining which techniques are more effective when used with individuals with a learning disability will also be discussed.
Brown, A. A., & Gill, C. J. (2002). Women with developmental disabilities: Health and aging. Current Women’s Health Reports, 2, 219-225. Retrieved February 1, 2005 from http://www.biomedcentral.com/content/pdf/cr-wr2334.pdf
Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice.
Brown, A. A., & Murphy, L. (1999, June). Aging with developmental disabilities: Women’s health issues. Arlington, TX & Chicago, IL: The Arc of the United States and the Rehabilitation Research and Training Center on Aging with Mental Retardation, University of Chicago-Illinois. Retrieved March 13, 2005 from http://www.uic.edu/orgs/rrtcamr/500015_womenshealth.pdf
“People with mental retardation and developmental disabilities are living longer, and good health plays a vital role in their quality of life as they age. Women generally live longer than men, so a larger number of the growing population of older people with developmental disabilities will be women. More research is needed to understand all the specific health issues of aging women with developmental disabilities and ways to support a healthier life-style.” A plain text version of this document can be found at http://www.thearc.org/faqs/whealth.html
Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., & Gasior Altman R. (2004, January). Embodied health movements: new approaches to social movements in health. Sociology of Health & Illness, 26(1), 50-80.
Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories: health access movements seek equitable access to health care and improved provision of health care services; constituency-based health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and embodied health movements (EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body to social movements, especially with regard to the embodied experience of people with the disease; 2) they typically include challenges to existing medical/scientific knowledge and practice; and 3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research and expanded funding. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement.
Buki, L. P., Borrayo, E. A., Feigal, B. M., & Carrillo, I. Y. (2004, December). Are all Latinas the same? Perceived breast cancer screening barriers and facilitative conditions. Psychology of Women Quarterly, 28(4), 400-411.
In this article, we examine perceived breast cancer screening barriers and facilitative conditions for immigrant women from Mexico, Puerto Rico, Cuba, El Salvador, and South America (N= 58). Focus groups conducted separately with women of each ancestry were analyzed using grounded theory methods. Identified barriers comprise secrecy, lack of information, embarrassment, fear, and distrust of health care providers. Perceived facilitative conditions include knowing the importance of early detection and noticing a symptom. We compare and contrast findings across ancestries and discuss how psychosocial and cultural factors could be better integrated into early detection programs. The women’s high screening rates also suggest that breast cancer screening can be facilitated in this population by addressing institutional factors (e.g., access to health care, transportation).
Cardenas, D. D., Bryce, T. N., Shem, K., Richards, J. S., & Elhefni, H. (2004). Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 85(11), 1774-1781.
Study examined gender and minority differences in the prevalence and severity of pain in people with spinal cord injury (SCI) as reported in follow-up surveys. Pain prevalence ranged from 81 percent at 1 year post injury to 82.7 percent at 25 years. Pain prevalence was significantly lower among non-whites, although they tended to report a higher average pain severity score when pain was present. People with SCI who were employed at the time of injury, who had more than a high school education, and who were not tetraplegic reported a higher prevalence of pain. Overall, women with SCI were no more likely to report pain or more severe pain than men.
Carlson, G., Taylor, M., Wilson, J., & Griffin, J. (1994). An introduction to menstrual management for women who have an intellectual disability and high support needs. International Journal of Disability, Development and Education, 41(2), 103-116.
This article describes a research project focusing on the management of menstruation for women who have labels of severe or profound mental retardation. The authors state the importance of acceptance of menstruation and explore the possibility of the women with the disabilities partially participating in their own menstrual care. Also included in the article are key factors to consider in developing skill development activities such as attitudes of care providers, and an illustrative case study.
Case, P. (2002). The impact of gender role on recovery from bone marrow transplantation. Illness, Crisis & Loss, 10(4), 344-355.
Few works have looked at the social impact of surviving bone marrow transplantation, a highly invasive treatment that challenges social roles and relationships with social institutions. No work to date has looked at how gender role might affect recovery between men and women. Identifying how these factors influence recovery is essential if the medical community is to address all of the needs of the patient in the post recovery setting. This article discusses findings of a longitudinal assessment of fifty-two long-term survivors of bone marrow transplantation. As was expected, satisfaction with life following transplant was more strongly associated with gender roles, with women more likely to be influenced by family support and emotional recovery and men more likely to be influenced by physical recovery and, to a lesser extent, emotional recovery.
Chappell, M. (1997). A way out: Women with disabilities and smoking. Ottawa: Health Canada, Tobacco Control Programme. Retrieved February 5, 2005 from http://www.hc-sc.gc.ca/hl-vs/pubs/tobac-tabac/awayout-sortie/index_e.html.
“This workbook was written by women with disabilities for women with disabilities who smoke. We hope that it will help you understand why you smoke. We also hope it will give you facts so you can make choices. It is very hard to change your smoking habits, But if and when you’re ready, this workbook might help… We found that no one had collected and published information about smoking and women with disabilities. Most smoking programs take place in buildings that are very hard (or impossible) for disabled people to get into. Written information is often hard to understand. Very little can be found in formats that women with disabilities can use, like plain language or Braille. In our study, we talked with women with disabilities who are current and recovering smokers, as well as non-smokers. We put together this workbook to share what we learned and to help women with disabilities “
Charles, N., & Walters, V. (2008, April). ‘Men are leavers alone and women are worriers’: Gender differences in discourses of health. Health, Risk & Society, 10(2), 117-132.
This paper explores gender differences in health talk, how such talk is informed by discourses at a societal level and the extent to which talking about health is a way of ‘doing gender.’ It draws on in-depth interviews with 48 women and men in their twenties and thirties showing that gender influences both the way people talk about health and their willingness to engage in health talk. It explores the way cultural constructions of gender influence the propensity to take risks with particular reference to HIV/AIDs and recreational drug use and the extent to which discourses of risk inform health talk. We discuss how changes in the occupational structure and the associated influx of men into ‘women’s’ work are associated with more ‘feminized’ masculinities and a recognition among some men of the male body’s vulnerability. They are also associated with men’s health talk becoming more like women’s. We conclude that cultural constructions of gender not only have an impact on health talk but also on the regulatory power of discourses of risk and risk management.
Chou, Y., Zxy-yann, J. L., Pu, C., & Lan, C. (2008, August). Predictors of female worker attitudes towards menstruation and the provision of help to institutionalized women with intellectual disabilities in Taiwan. Social Science & Medicine, 67(4), 540-545.
No previous research has examined the importance of both individual and environmental factors for predicting caregivers’ menstrual attitudes. To explore the predictors of female caregivers’ attitudes towards menstruation and the help they give to women with intellectual disabilities, we conducted a cross-sectional questionnaire survey which was completed by 725 female workers from 12 institutions in Taiwan. The Menstrual Attitudes Questionnaire (MAQ) and a structured questionnaire were used. Logistic regression analysis revealed that individual characteristics such as age and education were significantly associated with menstrual attitudes of female caregivers working with institutionalized women with intellectual disabilities. Furthermore, the environmental context, such as the frequency of discussions with colleagues, training in menstrual management care and the level of difficulty when giving help in menstruation management, was important for improving caregivers’ menstrual attitudes. This study contributes to the existing literature by determining both individual and environmental predictors of caregivers’ menstrual attitudes.
Cooper, N. S., & Yoshida, K. K. (2007, May). Cancer screening behaviors among Canadian women living with physical disabilities. Archives of Physical Medicine and Rehabilitation, 88(5), 597-603.
Objective: To report the prevalence and factors associated with ever having had a Papanicolaou (Pap) test or pelvic examination among Canadian women with physical disabilities and the barriers to having the tests.
Design: Cross-sectional survey.
Setting: General community.
Participants: Convenience sample of 1095 women between the ages of 18 to 93 completed the survey. The most frequently reported health conditions were musculoskeletal (44%), neurologic (17%), and sensory (13%).
Main Outcome Measures: Outcomes included prevalence of ever having a Pap test or pelvic examination and odds ratios of having the tests.
Results: Prevalence of ever having a Pap test was 90% and 91% for a pelvic examination. The most common barriers to the screening tests were “not being sexually active,” “my doctor told me I do not need one,” and “the exam table is too high/narrow.”
Conclusions: Although the prevalence of ever having a Pap test or pelvic examination was at or above 90%, women with physical disabilities need further education on the necessity and benefits of having regular cancer screening behaviors, especially among those who may not be sexually active. Further research is also required into why these women are informed that they do not require cancer screening tests.
Crescenzo, J. (2000). Our own best advocates: Breast health for women with disabilities [Video]. Boston: Fanlight Productions.
Early detection is a vital key to the successful treatment of breast cancer, and breast self-examination is one of the most important elements in detection. Yet for many women with upper-body disabilities, self-examination may have simply seemed impossible.
Dr. Sandra L. Welner, herself disabled in an auto accident, has developed an approach which trains and encourages women to make effective use of whatever arm and hand mobility they have and, in other cases, teaches their sisters or daughters, partners or personal care assistants to help. This unique video offers women with disabilities not only a crucial tool for protecting their lives, but a welcome opportunity to take a more active role in managing their own healthcare.
Davis, J. A. (2005). Differences in the health care needs and service utilization of women in nursing homes: Comparison by race/ethnicity. Journal of Women & Aging, 17(3), 57-71.
The purpose of this study is to describe health care needs and service utilization among institutionalized women of color. The sample was dichotomized by length of stay to determine how African American, Native American, Asian/Pacific Islander, and Hispanic/Latino women differed at two points in time. Data for this study came from the Current Resident Survey of the 1999 National Nursing Home Survey. The data were analyzed using GLM. The findings suggest that Native American women are the most impaired and Asian/Pacific Islander women are the least impaired. Additionally, very few women received mental health services despite their extensive need.
DiClemente, R. J., Wingood, G. M., Lang, G. L., Crosby, R. A., Salazar, L. F., Harrington, K., & Hertzberg, V. S. (2005, July). Adverse health consequences that co-occur with depression: A longitudinal study of black adolescent females. Pediatrics, 116(1), 78-81.
Objective. The purpose of this study was to identify adverse health consequences that may co-occur with depression among black female adolescents.
Methods. Adolescents were recruited from high-risk neighborhoods in Birmingham, Alabama. The sample comprised 460 black female adolescents (aged 14–18 years) who completed assessments at baseline and at 6 and 12 months. Only adolescents who consistently scored above the threshold for depression at all 3 assessments (n = 76) or below the threshold at all 3 assessments (n = 174) were included (N = 250) in the data analysis. Within this sample, adolescents who were depressed were compared with those who were not depressed with respect to the following health consequences: low self-esteem, emotional abuse, physical abuse, verbal abuse, poor body image, and antisocial behavior.
Results. Using generalized estimating equations and controlling for covariates, depressed adolescents were 5.3 times more likely to report low self-esteem, 4.3 times more likely to report emotional abuse, 3.7 times more likely to report being physically abused, and almost 3 times as likely to report being verbally abused. Furthermore, depressed adolescents were more than twice as likely to report poor body image and nearly twice as likely to report engaging in antisocial behaviors.
Conclusions. The findings suggest that a broad range of adverse health consequences may accompany depression among black female adolescents. Physicians need to be alert to the co-occurrence of depression and low self-esteem; emotional, physical, and verbal abuse; poor body image; and antisocial behaviors among this population.
Dobkin, P. L., De Civita, M., Abrahamowicz, M., Baron, M., & Bernatsky, S. (2006, June). Predictors of health status in women with fibromyalgia: A prospective study. International Journal of Behavioral Medicine, 13(2), 101-108.
Although cross-sectional studies have identified correlates of dysfunction in fibromyalgia (FM) patients (e.g., psychological distress and pain), predictors of health status have not been previously investigated using a longitudinal research design. We gathered data from 156 women who met American College of Rheumatology criteria for primary FM recruited from both tertiary care and community settings. Stepwise multiple linear regression analysis indicated that poorer health status (p < .0001) and more comorbidity (p = .0089) at baseline were predictors of poorer health status 6 months later. After controlling for these covariates, psychological distress contributed significantly to the model (p = .01). There was a trend indicating that palliative coping styles (i.e., self-care, energy conservation) altered the impact of pain on 6-month health status (p = .06). These findings highlight the need for multidisciplinary interventions that target psychological distress, coping, and comorbidity in patients with FM.
Dodge, J. A., Janz, N. K., & Clark, N. M. (2002). The evolution of an innovative heart disease management program for older women: Integrating quantitative and qualitative methods in practice. Health Promotion Practice, 3(1), 30-42.
Few studies in the literature describe how to combine quantitative and qualitative methods to enhance the development of health education interventions. This article describes the evolution and refinement of an innovative disease management program “take PRIDE” for older adults with heart disease. Over 15 years, information obtained from data collection methods including telephone interviews, focus groups, face-to-face interviews, and program process data illuminated and guided subsequent refinement of the program and led to new iterations for different participants. Qualitative and quantitative data were incorporated into two key areas of program development (theoretical framework, objectives, format, and content) and evaluation (evaluation design, sampling, and measurement). Combining both types of data enhanced the opportunity to detect needed program changes, to increase understanding of the mechanisms by which the program effects were produced, and to enhance the relevance of the program to different groups of program participants.
Elson, J. (2003). Hormonal hierarchy: Hysterectomy and stratified stigma. Gender & Society, 17(5), 750-770.
Gynecological surgery prompts women to consider the meanings of their uteruses and ovaries, generally taken for granted as “natural” components of female bodies. Analysis of 44 in-depth interviews with women who underwent hysterectomy indicates that a preponderance of respondents conceptualized a socially constructed hormonal hierarchy based on the degree to which ovaries were excised in the course of surgery. While retained ovaries may not always produce actual physiological benefits, respondents placed great symbolic value on ovaries (or parts of ovaries) as the source of female normality. This reflects cultural understandings that hormones produced by the ovaries are the essential determinants of sexual difference. The interweaving of social constructionist and biological perspectives in respondents’ narratives helps to elucidate the complicated interaction between the material body and the social body.
Estores, I. M., & Sipski, M. L. (2004). Women’s issues after SCI. Topics in Spinal Cord Injury Rehabilitation, 10(2), 107-125.
Article summarizes gender-specific problems, effective interventions, and gaps in knowledge found in current literature on women with spinal cord injury (SCI). Gynecologic, endocrine and metabolic, urologic, musculoskeletal and mobility, aging and preventive care, and psychological issues are discussed, as well as concerns regarding sexuality, domestic violence, community reintegration, and quality of life for women with SCI.
Fact sheet: Access to preventive health care services for women with disabilities. (2003, May). Washington, DC: Association of State and Territorial Health Officials. Retrieved February 1, 2005 from http://www.astho.org/pubs/WomenwithDisabilitiesFactSheet2.pdf
“This fact sheet provides an overview of some of the major barriers to accessing preventive health care that women with disabilities face and provides actions state public health agencies can consider pursuing to eliminate these barriers.”
Ference, T. (1999). Rehabilitation issues: Women with disabilities. Sexuality and Disability, 17(3), 187-197.
Articles about clinical management of women with disabilities in rehabilitation medicine. The discussion is organized around common neurological and musculoskeletal causes of disability, such as stroke, multiple sclerosis (MS), spinal cord injury (SCI), and rheumatoid arthritis (RA), and around particular issues in clinical management, such as spasticity, pain management, bowel and bladder management, and skin care (prevention of decubitus ulcers).
Ferreyra, N. (2001, March/April). Living out loud: Building resiliency in adolescent girls with disabilities. Disability World #7. Retrieved March 20, 2005 from http://www.disabilityworld.org/03-04_01/women/lol.shtml
The Living Out Loud program was a five-year demonstration project serving female adolescents aged 14-21 with learning disabilities and/or physical disabilities. Located in the San Francisco Bay Area, the project operated from October 1994 through December 1999. Funded by the federal Center for Substance Abuse Prevention (CSAP), the goal of the project was to build resiliency in disabled girls so they would not use tobacco, alcohol, or other drugs. The project sought to lessen the risk factors for substance abuse while building on the strengths and capacities of the participants to enable them to become strong, successful young women.
Fiduccia, B. D. (n.d.). Disabled women’s sexual and reproductive health resource packet. San Jose, CA: Americans with Disabilities Act and Reproductive Health Project, California Family Health Council. Retrieved March 5, 2005 from http://www.empowermentzone.com/repropak.txt.
This is an older listing of various resources concerning sexual and reproductive health, ranging from accessible exam space to reproductive rights and technology. While some resources are no longer available, it is a reference to historic information that we must still consider as vital for women with disabilities.
Forchheimer, M. B., Kalpakjian, C. Z., & Tate, D. G. (2004). Gender differences in community integration after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 10(2), 163-174.
Study examined differences in the environmental barriers and levels of community integration reported by men and women with spinal cord injury (SCI). A sample of 2,048 patients participating in the Model Spinal Cord Injury Care System was studied. The Craig Handicap Assessment and Reporting Technique (CHART) was used to assess community integration and the Craig Hospital Inventory of Environmental Factors was used to assess barriers. Analyses of these measures revealed that women reported experiencing environmental barriers more frequently than men. Gender differences were found for the occupation scale of the CHART but not for its other scales.
Frazee, C., Gilmour, J., Mykitiuk, R., & Bach, M. (2002). The legal regulation and construction of the gendered body and of disability in Canadian health law and policy. Toronto: National Network on Environments and Women’s Health. Retrieved March 8, 2005 from http://www.yorku.ca/nnewh/english/pubs/Legal
RegulationandConstruction.pdf
This study seeks to document and analyze the uneasy relationship between that most ubiquitous and unyielding form of social control–the institution of law–and the “unwieldy… humanness” of women’s bodies “in all their glorious imperfection.” Our over-riding objective is to make visible and concrete the links between a woman’s lived experience of health, and the organization of her experience by law.
Froehlich-Grobe, K., Figoni, S. F., Thompson, C., & White, G. W. (2008, July). Exploring the health of women with mobility impairments. Women & Health, 48(1), 21-41.
This study examined health surveys of 109 midwestern women (mean age 44.6 ± 8.2 years) with impaired mobility to determine whether mobility impairment severity was related to self-reported health, health care use, and engaging in health behaviors. The study also assessed which health factors were associated with pain. Women with severe mobility impairments reported poorer physical functioning, but better mental health than less severely impaired women after controlling for age, disability duration, and/or bodily pain. Degree of mobility impairment level was not significantly related to health behaviors, except having a checkup in the past year; more moderately impaired women reported these visits than mildly impaired women. Furthermore, pain was significantly associated with social functioning, general health, and secondary conditions. The findings suggest that factors beyond impairment level, such as pain, age, and disability duration, are related to the health of mobility-impaired women.
Gill, C. (Producer). (n.d.). Learning to act in partnership: Women with disabilities speak to health professionals [Video]. Chicago: Health Resource Center for Women with Disabilities, The Rehabilitation Institute of Chicago.
This video, conceived by women with disabilities working in partnership with healthcare providers, addresses the dearth of training materials around disability and women’s health. The message is centered in the voices of the women and organized in five sections: Access barriers, sexuality & reproductive health, mental health & domestic violence, aging, and public policy.
Gill, C. J. (1997). The last sisters: Health issues of women with disabilities. North Bay, ON: DAWN Ontario. Retrieved February 1, 2005 from http://dawn.thot.net/cgill_pub.html
“The needs and concerns of women with disabilities are less exotic than many nondisabled people might imagine. In fact, the health issues that women with disabilities highlight as critical may sound unexpectedly familiar. They should sound familiar, because they are women’s health issues.” An edited version of this article has been published as: Gill, C. J. (1997). The last sisters: Disabled women’s health. In S. B. Ruzek, V. Olesen, & A. Clarke (Eds.), Women’s Health: Complexities and Differences. Columbus, OH: Ohio State University Press.
Gill, C. J., & Brown, A. A. (2000). Overview of health issues of older women with intellectual disabilities. In J. Hammel & S. M. Nochajski (Eds.), Aging and developmental disability: Current research, programming, and practice implications [Special issue]. Physical & Occupational Therapy in Geriatrics, 18(1), 23–36.
Health researchers, educators and providers have begun to address the health needs of women and girls with disabilities in the U.S. Older women with intellectual disabilities, however, remain underrepresented in the national health research agenda. As this population becomes more visible and empowered through policies that support greater community integration and longevity, they and their families, professionals and advocates need more accurate information about their health concerns and options. A critical problem is that professionals receive little training regarding the health concerns and experiences of women with intellectual disabilities who are growing older. This paper provides an overview of primary health issues related to aging for women with intellectual disabilities in the following areas: (1) general health, (2) reproductive health, (3) mental health, and (4) access to health services. The paper concludes with a discussion of implications for practice and research, and recommendations for future research and health service provision for women with intellectual disabilities.
Grabois, E. (2001). Guide to getting reproductive health care services for women with disabilities under the Americans with Disabilities Act of 1990. Sexuality and Disability, 19(3), 191-208.
For women with disabilities, obtaining reproductive health care services from physicians is not always easily accomplished. There are non-physical barriers such as: 1) physicians’ attitudes that dehumanize women with disabilities, and treat them as asexual: 2) women with disabilities’ lack of knowledge about sexuality and reproduction; and 3) physicians’ unfamiliarity in treating women with disabilities. There are physical and architectural barriers as well, such as: 1) physicians’ offices that are inaccessible; and 2) patients’ difficulties in communicating with their physicians if they have a visual or hearing impairment. The Americans with Disabilities Act (ADA) was passed by Congress in 1990, and this statute generally and specifically prohibits physicians, both in their private offices and in state and locally-funded health care clinics, from engaging in certain actions that may prevent women with disabilities from obtaining reproductive health care services. Physicians cannot deny services, cannot give unequal treatment, and cannot give separate treatment to women with disabilities who are covered under the Act. The ADA encourages physicians to integrate patients with disabilities with patients without disabilities. Specifically, the ADA prohibits: 1) eligibility criteria that screen out patients with disabilities; 2) not modifying policies, practices, and procedures to accommodate the needs of women with disabilities; 3) not using auxiliary aids and services or an alternative means of communication with patients with disabilities, unless it is an undue burden; and 4) not removing architectural and communication barriers that are structural in nature, if readily achievable. For violations of the ADA, complaint procedures are listed in this article, as well as sources of information from which women with disabilities and others can obtain more knowledge about the ADA.
Greendale, G. A., McDivit, A., Carpenter, A., Seeger, L., & Huang, M. (2002, October). Yoga for women with hyperkyphosis: Results of a pilot study. American Journal of Public Health, 92(10), 1611-1614.
The thoracic region of the spine is normally kyphotic, or anteriorly concave. Hyperkyphosis refers to excessive kyphotic curvature. Greendale et al. conducted a trial to assess the effects on anthropometric and physical function of yoga among women with hyperkyphosis. The use of yoga among women with hyperkyphosis is safe and acceptable and may produce better posture.
Grover, S. R. (2002). Menstrual and contraceptive management in women with an intellectual disability. Medical Journal of Australia, 176(3), 108-110.
Objective: To review the clinical management of young women with intellectual disabilities with menstrual and contraceptive concerns.
Design: Prospective cohort study of all girls and young women with a significant intellectual disability and moderate to high support needs who presented at my gynaecology clinic for management of menstrual and contraception-related issues in the period 1990–1999.
Setting: Gynaecology clinic at the Centre for Adolescent Health, Royal Children’s Hospital, Melbourne, and my private consulting rooms.
Outcome measures: The clinical management options considered most appropriate for these women, including advice, reassurance, medication (oral contraceptive pill, non-steroidal anti-inflammatory drugs, depo-medroxyprogesterone acetate, hormone replacement therapy) and surgical options.
Results: For 2 of 107 young women, surgical approaches were required to manage their menstrual problems or contraception-related issues. For the remainder of the women, information, advice or medical management were sufficient.
Conclusions: Management of the menstrual and contraceptive needs of young women with an intellectual disability is similar in most cases to the management of non-disabled women. Surgical management is required infrequently.
Harrison, T. (2003). Women aging with childhood onset disability: A holistic approach using the life course paradigm. Journal of Holistic Nursing, 21(3), 242-259.
Women with childhood onset disabilities (CODs) are living longer and it is time for holistic nurses to focus on understanding such women from a life course perspective. As women with CODs live into later adulthood, nurses must be prepared to anticipate and assist as needed. Without studies designed to understand the life course of these women, nursing can neither gain a clear understanding of the problems they face with aging nor help prevent the high number of social inequities, secondary conditions, and comorbidities experienced. To begin nursing’s exploration of the problems faced by women with CODs, the relevant historical changes and literature associated with aging with a COD are reviewed. Next, the life course paradigm is critically analyzed in relation to the lives of these women. In conclusion, it is posited that the life course paradigm provides the most useful guide for a holistic understanding of women with CODs.
Harrison, T. C., Umberson, D., Lin, L., & Cheng, H. (2010). Timing of impairment and health-promoting lifestyles in women with disabilities. Qualitative Health Research OnlineFirst.
The purpose of this study was to develop a substantive theory to explain how the timing of impairment in women’s lives influenced health-promoting lifestyles among 45 women age 43 to 79 years with impairments of varying onset across the life course. From this grounded theory exploration, we suggest that women created health-related lifestyles that were comprised of changing abilities, roles, and rituals in support of perceived self. The ultimate goal of a healthy lifestyle was healthy aging, which was self-determination in the support of positive relationships. Environment and resources had direct influence on the perceived self. Our proposed substantive theory provides an understanding of how women develop a healthy lifestyle after the onset of permanent sensory or physical impairment. It also takes steps toward an understanding of how timing of impairment influences the perceptions women have of themselves and their health behaviors.
Hay, I., & Ashman, A. F. (2003, March). The development of adolescents’ emotional stability and general self-concept: The interplay of parents, peers, and gender. International Journal of Disability, Development and Education, 50(1), 77-91.
Gender differences associated with the development of adolescents’ sense of general self-concept (confidence and self-worth) and emotional stability (calmness, freedom from anxiety, and depression) were investigated using a sample of 655 adolescents (mean age 16 years). Relationships with parents were important for males’ emotional stability but not females’ and so this finding challenges the belief that adolescent males are more concerned with establishing independence from parents than females. The research also challenges the notion that adolescent boys are less interested in close personal peer relationships than girls. Same sex and opposite sex peer relationships were more influential in the formation of adolescents’ emotional stability than parental relationships. A reciprocal relationship was revealed between general self-concept and emotional stability. Comparing these results with results obtained on the same students 18 months previously (aged 14.5 years), demonstrates that adolescents increasingly transfer their emotional attachment from parents to peers in a process called individuation.
Hendy, H. M., & Nagle, T. R. (2002). A critical examination of gender differences in nutritional risk for rural adults with disability. Rehabilitation Psychology, 47(2), 219-229.
Telephone interviews were conducted with 124 rural adults to examine gender differences in nutritional risk and to identify specific nutritional barriers that intervention programs might target for rural adults with disabilities. Women reported greater nutritional risk, but were significantly older and more disabled than the men. Results suggest that rehabilitation psychologists should consider age and disability first, rather than gender-related assumptions about nutritional risk. Nutrition intervention programs should be designed to include shared meals, reduced food costs, transportation to stores, meal preparation, and exposure to new tastes.
Hershey, L. (2000). Women with disabilities: Health, reproduction, and sexuality. Retrieved March 25, 2005 from http://www.cripcommentary.com/women.html
“Women with disabilities share the same health, reproductive, and sexual needs and concerns as other women. In addition, disabled women face additional problems and raise particular issues related to health, reproduction and sexuality. Around the world, women with disabilities are raising their expectations for self-determination and quality of life. More and more, disabled women are demanding the right to live independently, integrated into their communities, setting their own goals and making their own choices. In so doing, they challenge their societies to be more accessible, supportive, and inclusive.”
This article has also been published in the International Encyclopedia of Women: Global Women’s Issues and Knowledge published by Routledge Press.
Hoffman-Goetz, L., & Donelle, L. (2007, April). Chat room computer-mediated support on health issues for Aboriginal women. Health Care for Women International, 28(4), 397-418.
Within contemporary health care, increases in chronic disease have necessitated a disease management focus. Given that chronic disease is managed, more so than cured, there are increased demands for greater participation by health care consumers and they are expected to take on increased responsibility for self-care. The emphasis on consumer responsibility has increased the significance of health-promoting behavior change in contending with contemporary health care concerns. In Canada, the reported inequity in health status between Aboriginal and non-Aboriginal Canadians further emphasizes the need for innovative health strategies. For Aboriginal women isolated by geography, changing societal norms (e.g., women working outside of the home, single parent families), and cultural distinction, online chat participation serves as a novel medium for the provision of health knowledge, support, and motivation within a virtual “neighborhood.” Recognizing the significance of social support in the promotion of positive health behavior change, we investigated the theme of social support within health conversations among Aboriginal women participating in an online chat room. Content analysis was the primary methodological focus within a mixed methods approach. Of 101 health-based online conversations, the majority reflected one of three forms of social support: (1) emotional support, (2) informational support, or (3) instrumental support. The value of social support and social cohesion within health has been well documented. The current investigation suggests that “community” need not be physically constructed; virtual communities offer great potential for social cohesion around the issues of health and health care.
Howland, C. (2003). Evaluation of a web site to educate women with physical disabilities about reproductive health maintenance. In RRTC Health and Wellness Consortium (Eds.), Changing concepts of health & disability: State of the science conference & policy forum 2003 (pp. 56-61). Portland, OR: Oregon Health and Sciences University. Also on-line at: http://www.healthwellness.org/training/
sciconf/sciconf_briefs/womens.htm
“The purpose of this study was to develop and evaluate the effectiveness of instructional modules on the Internet in improving reproductive health care knowledge and behaviors among women with physical disabilities.”
Hughes, R. (2006, January/March). Achieving effective health promotion for women with disabilities. In A. Stuifbergen (Ed.), Promoting Health in Persons with Chronic and Disabling Conditions [Feature Issue]. Family & Community Health, 29(1), Supplement: 44S-51S.
The field of health promotion has yet to acknowledge the unique needs of women with disabilities, a population representing approximately 1 of 5 women in the United States. Compared with women without disabilities, women with disabilities have critical needs for evidence-based health promotion services. Women with disabilities face a lack of access to multitudinous opportunities for maintaining and improving their overall health. Inaccessible exercise equipment and other disability-related barriers discourage women with physical disabilities from engaging in health-promoting behaviors. This article identifies 10 essential elements for achieving effective health promotion research and interventions for women in this population.
Hughes, R. B. (Ed.). (2006, November-December). Theme issue on women and disabilities. Women’s Health Issues, 16(6).
“This theme issue on women and disabilities addresses many of the disparities between women with disabilities and women without disabilities, suggests avenues for eliminating those disparities, and contributes to the growing knowledge base on the health related issues of this largely disadvantaged and underserved population of women” (p. 283).
Articles included in this feature issue include:
- Disability and receipt of clinical preventive services among women
- Health, preventive health care, and health care access among women with disabilities in the 1994–1995 National Health Interview Survey, Supplement on Disability
- Health service use and outcomes among disabled Medicaid pregnant women
- Physical activity and nutritional behaviors of women with physical disabilities: Physical, psychological, social, and environmental influences
Improving the health and health behaviors of women aging with physical disabilities: A peer-led health promotion program - Associations between fracture incidence and use of depot medroxyprogesterone acetate and anti-epileptic drugs in women with developmental disabilities
- Illness perceptions and related outcomes among women with fibromyalgia syndrome
- Diabetes care among veteran women with disability
- Sexual assault patterns among women with and without disabilities seeking survivor services
- An examination of depression through the lens of spinal cord injury: Comparative prevalence rates and severity in women and men
- Stress self-management: An intervention for women with physical disabilities
Hunsberger, M. B. (2001). Women with disabilities: Strategies for change: Health Care Summit Report. Trenton, NJ: New Jersey Developmental Disabilities Council. Retrieved April 2, 2005 from http://www.njddc.org/whc-report.pdf
“In June, 2001, 66 women with disabilities gathered in Iselin, New Jersey, from all over the state. They came together to start a movement. The movement’s goals were: to improve the quality of health care for women with disabilities: to increase its availability and to assure that it is delivered by health professionals knowledgeable about and sensitive to the specific needs of women with disabilities, regardless of the nature of those disabilities….Led by keynote speaker June Isaacson Kailes, the women identified a number of barriers that prevented them from receiving adequate health care…. Summit participants began to develop strategies to address the most significant issues they had identified. They established a steering committee to develop those strategies further and to acquire the additional support and resources to implement them.”
Husaini, B. A., Sherkat, D. E., Levine, R., Bragg, R., Holzer, C., Anderson, K., Cain, V., & Moten, C. (2002). Race, gender, and health care service utilization and costs among Medicare elderly with psychiatric diagnoses. Journal of Aging and Health, 14(1), 79-95.
Objective: To investigate race and gender differences in health care service utilization and costs among the Medicare elderly with psychiatric diagnoses.
Methods: The authors employ a 5% sample of Medicare beneficiaries from Tennessee (N =33, 680), and among those with a psychiatric diagnosis (n =5, 339), they examine health care service utilization and costs by race and gender.
Results: African Americans had significantly higher rates of diagnosis for dementia, organic psychosis, and schizophrenia, whereas Whites had significantly higher rates for mood and anxiety disorders. White and African American men have higher rates of utilization of emergency and inpatient services and lower rates of outpatient utilization compared to White women and African American women. African American men have significantly higher health care costs.
Discussion: The findings suggest that race and gender interact to influence service utilization and preventive care, thereby driving up costs of care, for elderly persons with psychiatric diagnoses.
Isaksson, G., Skär, K., & Lexell, J. (2005, September). Women’s perception of changes in the social network after a spinal cord injury. Disability & Rehabilitation, 27(17), 1013-1021.
Purpose: To describe how women with a spinal cord injury (SCI) perceived changes in the social network, and how these changes affected their ability to participate in occupation.
Method: Thirteen women, aged 25 to 61 years, with a SCI were interviewed twice. The interviews focused on their ability to participate in occupation, their relations with individuals within the social network, and changes in the social network following the SCI. The analysis was carried out using qualitative content analysis.
Results: The women described an emotional need for social support after the SCI to participate in occupation. This was a new experience that required time to adapt to. The women also described a need for practical social support from the social network members to manage meaningful occupation. After the SCI, the women had developed new habits through close cooperation with members in the social network. The women felt that they had become more responsible for the development of their relations. Many relations had improved after the SCI, while some had decreased. The women had also developed new relations with other persons with disabilities.
Conclusions: The women perceived substantial changes in the social network following the SCI, which in several ways affected their ability to participate in occupation. To adapt to their new life situation, the women gradually developed different strategies. The results point out the need to identify persons in the social network that women with SCI develop relations with, and integrate them in the rehabilitation process.
Jackson, A. B., & Wadley, V. (1999). A multicenter study of women’s self-reported reproductive health after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 80(11), 1420-1428.
Study of reproductive health conditions, complications, and behaviors in women with spinal cord injury (SCI). Data are from 472 responses to an extensive questionnaire on gynecological, sexual, obstetrical, and menopausal health issues.
Johnson, K., Strong, R., Hillier L., & Pitts, M. (2002, October). Screened out! Women with disabilities and cervical screening. Carlton, Victoria: PapScreen Victoria. Retrieved March 15, 2005 from http://www.papscreen.org/ps/pdf/Screened_out.pdf
“Screened Out! was a six month study funded by PapScreen Victoria which was undertaken by the Australian Research Centre in Sex Health and Society at La Trobe University. The project arose from concerns that women with disabilities are less likely than other women in the community to have regular cervical screening (Pap tests). This is a matter of concern because cervical screening has been found to be a very effective means of lessening the number of women who develop cervical cancer. In the project we aimed to discover the barriers that women with disabilities met when they had cervical screening. We began the study with a series of consultations with key organisations that provided services for women with disabilities or advocated with them. We then held interviews with 25 women who had sensory, intellectual, psychiatric or physical disabilities. We talked with other women in small groups. Finally we met with cervical screening providers and discussed how they saw the barriers for women with disabilities. We found that while some women did not have any problems in having Pap tests, other women found it very difficult.”
Jones, G. C., & Bell, K. (2004, January-March). Adverse health behaviors and chronic conditions in working-age women with disabilities. In J. Lancaster (Ed.), Crossing barriers to health: Disability issues within the family and community [Feature Issue]. Family and Community Health, 27(1), 22-36.
An estimated 30 million women with disabilities reside in the US. Living a health enhancing lifestyle is important for every woman, but especially for women with disabilities who have been characterized as having a thinner margin of health. Jones and Bell conducted a retrospective, cross-sectional, multiple cohort study of women with disabilities that addresses two health-related areas in nationally representative sample of women living in the US.
The Kaiser Family Foundation. (2004, November). Issue brief: Medicaid’s role for women. Washington, DC: Author. Retrieved March 15, 2005 from http://www.kff.org/womenshealth/loader.cfm?url=/commonspot/security/getfile.cfm&PageID=48681
“Despite its critical importance as a health care safety net for nearly one in ten women, Medicaid is not typically viewed as a women’s health program. This briefing addresses how the program works for women; examines its role for women across the different stages of their lives; provides data on women’s coverage; highlights recent state initiatives of importance to women, and discusses what women have at stake in federal and state efforts to restructure the Medicaid program.” Also available are fact sheets on women’s health insurance coverage at: http://www.kff.org/womenshealth/whp111004pkg.cfm
Kaye, H. S., & Toveg, F. (2007, November). Breast and cervical cancer screenings among California women with disabilities. Berkeley: Breast health Access for Women with Diabilities (BHAWD). Available http://www.bhawd.org/sitefiles/Cancer
Screenings2005BW.pdf.
“Women with disabilities living in California are substantially less likely to obtain recommended screenings for breast and cervical cancer than their peers without disabilities, putting their long-term health at increased risk. This finding is based on an analysis of 2005 data from the California Health Interview Survey (CHIS), a biennial telephone survey of a random sample of some 43,000 California households; the survey excludes people living in institutions. In 2005, the CHIS included six questions, adapted from questions used in the Census Bureau’s American Community Survey, that identify people with broadly defined sensory, physical, or cognitive disabilities, as well as limitations in basic self-care activities, in leaving the home without assistance, or, among working-age adults, in the ability to work. Some 4.3 million women, or 32.3 percent of all California adult women, are identified as having some type of disability by this measure” (p. 1).
King, G., Hershey, L. S., & Trent, R. (2006, May). Chapter 10: Women with disabilities and their health, health care access, and utilization. In Z. Weinbaum & T. Thorfinnson (Eds.), Women’s Health: Findings from the California Women’s Health Survey, 1997-2003. Sacramento: California Department of Health Services, Office of Women’s Health. Available: http://www.cdph.ca.gov/HealthInfo/injviosaf/
Documents/Disability-CWHS-EPIC.pdf.
“The California Department of Health Services, Office on Disability and Health (ODH) is committed to improving the quality of life for people with disabilities. With support from the Centers for Disease Control and Prevention, ODH is working with disability constituencies, researchers, and other state programs on the needs of California’s growing and diverse disability population. This chapter describes California women with disabilities and examines selected issues of their health and health care experiences” (p. 10-1).
Klebine, P. (n.d.). Spinal cord injury research: The reality for women. Birmingham, AL: University of Alabama at Birmingham. Retrieved February 1, 2005 from http://www.spinalcord.uab.edu/show.asp?durki=59843
Brief document from the Spinalcord Injury Information Network that reports on the lack of and need for health-related research on SCI that is specific to gender.
Kopac, C. A. (2002, October). Gynecological and reproductive healthcare for women with special needs. The Exceptional Parent, 32(10), 78-83.
Kopac outlines issues that parents, direct support professionals (DSPs), health care professionals, and teenage and young-adult women themselves face as they access gynecological and reproductive health care. She also describes approaches that parents, DSPs, and primary care providers who support teens and young women with developmental disabilities have found to be helpful.
Krotoski, D. M., Nosek, M. A., & Turk, M. A. (1996). Women with physical disabilities: Achieving and maintaining health and well-being. Baltimore: Paul H. Brookes Publishing Co.
This groundbreaking resource addresses a broad range of issues of importance to the health and well-being of women with physical disabilities. Written by well-respected researchers and women with disabilities, chapters examine sexuality and reproduction; love, marriage, and relationships; bowel and bladder management; stress; and physical fitness. Essential reading for health care and rehabilitation professionals, physiatrists, advocates, policy makers, clinicians, researchers, and women with disabilities.
Kvigne, K., & Kirkevold, M. (2003). Living with bodily strangeness: Women’s experiences of their changing and unpredictable body following a stroke. Qualitative Health Research, 13(9), 1291-1310.
The authors’ aim in this phenomenologial and feminist study was to gain a deeper understanding of how female stroke survivors experienced their body after a stroke. They recruited 25 women in a rural area in eastern Norway who had suffered a first-time stroke and interviewed them in depth three times each during the first 1 1/2 to 2 years following the stroke. The data analysis was inspired by phenomenological method. The stroke survivors’ experiences of their bodies were characterized by profound, disturbing, and, in part, unintelligible changes during the onset and the process of recovery from the stroke. Their experiences can be summarized under three major themes: The Unpredictable Body, The Demanding Body, and The Extended Body.
Lee, E. O., & Oh, H. (2005, September). A wise wife and good mother: Reproductive health and maternity among women with disability in South Korea. Sexuality and Disability, 23(3), 121-144.
As the first national survey on disability and reproductive health in South Korea, the present study was undertaken to describe experiences and needs related to pregnancy, childbirth, and postnatal care among women with physical disability (WWPD). Using a stratified random sampling method, 410 married WWPD between the ages of 18 and 50 participated in the survey regarding respondents’ socio-demographic profiles, disability-related characteristics, and reproductive health during pregnancy, childbirth, and postnatal care. Findings of this study indicated that most respondents wanted to have a child and perceived child care as possible with appropriate social support. Unlike the conventional wisdom and low societal expectation for these women to perform a maternal role, they gave birth and became caregivers for their child(ren) and family members. This study highlights a wide range of barriers experienced by WWPD with regards to taking care of their reproductive health. Implications for practice and policy are discussed.
Legg, J. S., Clement, D. G., & White, K. R. (2004, November). Are women with self-reported cognitive limitation at risk for underutilization of mammography? Journal of Health Care for the Poor and Underserved, 15(4), 688-702.
Functional limitations (namely, limitations in activities of daily living and instrumental activities of daily living) have previously been demonstrated to exert a negative influence on mammography utilization. This study examines self-reported cognitive limitation in addition to sociodemographic, functional, and other health-related factors to determine their relationship with self-reported mammography use in the previous year. Data from the 1998 National Health Interview Survey was analyzed for 6,053 women, ages 50 years and older. Just over 44% of women with self-reported cognitive impairment (n = 351) reported a mammogram in the previous year, compared with 55% of unimpaired women (n = 5,702). Logistic regression analysis indicates that the presence of a cognitive limitation significantly reduced the likelihood of a mammography in the previous year (p < 0.05) after controlling for other sociodemographic, functional, and health-related factors. Women with self-reported cognitive limitations were 30% less likely than unimpaired women to utilize mammography after controlling for various forms of disability and other factors. Thus, women with cognitive impairments may be at risk for underutilization of mammography and therefore at risk for later-stage breast cancer diagnoses.
Leveille, S. G., Resnick, H. E., & Balfour, J. (2000, April). Gender differences in disability: Evidence and underlying reasons. Aging, 12(2), 106-102.
Women have greater longevity than men and represent a larger proportion of the expanding older population. Several health, disease, behavioral and sociodemographic factors contribute to the higher prevalence of disability in women compared to men. This paper presents a review of methodologic and epidemiologic considerations important to our understanding the gender differences in the prevalence of disability, and discusses underlying causes for these differences. Compared to men, women have a longer duration of life lived with disability, in part due to higher prevalence of non-fatal chronic conditions, constitutional factors such as lower muscle strength and lower bone density, and higher rates of life-style factors such as sedentary behavior and obesity. Several of these factors are modifiable, and provide important targets for researchers, clinicians, and public health practitioners in their efforts to reduce the burden of disability in the older population.
Li, L., & Ford, J. A. (1998). Illicit drug use by women with disabilities. American Journal of Drug & Alcohol Abuse, 24(3), 405-418.
Study examines the patterns of illicit drug use and risk factors relating to illicit drug use among a random sample of 900 women with various disabilities. Multiple regression analyses revealed that age, illicit drug use by a best friend, and being a victim of substance abuse-related violence. Attitudes towards substance use by people with disabilities (i.e., entitlement attitudes) were significantly related to illicit drug use by the study population. Across disability categories, women with chemical dependency as a primary disability reported the highest incidence (40%) of illicit drug use in the past 12 months. Followed by: those with mental illness (26.3%), those with medical disabilities (18.4%), and those with physical disabilities (18.2%). Women with mental retardation or learning disabilities reported the lowest rates of illicit drug use (9.6%). The implications of these findings are discussed.
Lipson, J. G. (2000). Pregnancy, birth, and disability: Women’s health care experiences. Health Care for Women International, 21(1), 11-26.
This qualitative study examined the pregnancy, birth and postpartum experiences of 12 women with mobility-limiting physical disabilities. Analysis of semi-structured interviews of one to two hours revealed that the women’s experiences were influenced by their own perspectives and the characteristics of health care system within which they were treated. The woman’s experience included the effect of her disability, her resources, and her personality and approach. Health care system factors included provider attitudes, knowledge
Lorber, J., & Moore, L. J. (2002). Gender and the social construction of illness (2nd ed). Walnut Creek, CA: AltaMira Press.
The authors consider the interface between the social institutions of gender and Western medicine in this brief, lively textbook. They offer a distinct feminist viewpoint to analyze issues of power and politics concerning physical illness. In the extensively revised second edition of this successful text, the authors add chapters on disability and genital surgeries. They also update and expand their discussions of social epidemiology, AIDS, the health professions, PMS, menopause, and feminist health care. For a creative, feminist-oriented alternative to traditional texts on medical sociology, medical anthropology, and the history of medicine, this is an ideal choice.
Lunsky, Y., Straiko, A., & Armstrong, S. (2003, December). Women be healthy: Evaluation of a women’s health curriculum for women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilties, 16(4), 247-253.
Background: Insufficient attention has been paid towards treating the unique health needs of women with intellectual disabilities. This paper describes an 8-week curriculum, “Women Be Healthy,” developed for women with intellectual disabilities to help them become more equal partners in their health care. The curriculum includes psycho-education, coping skills training, exposure to the medical setting and assertiveness training.
Materials and methods: Twenty-two women completed assessments of health knowledge, health behaviour beliefs and coping strategies, prior to and following participation in the 8-week curriculum, which took place in a group setting at a clinic for people with intellectual disabilities.
Results: Women showed significant improvements in health knowledge, health behaviour beliefs and coping strategies following intervention, and maintained some of these treatment gains (health knowledge and health behaviour beliefs) at a 10-week follow-up.
Conclusions: “Women Be Healthy” is an example of a group-based intervention that helps women with intellectual disabilities become more knowledgeable and perhaps more comfortable with health-care procedures.
Lunsky, Y., Straiko, A., & Armstrong, S., revised by Havercamp, S., Kluttz-Hile, C., & Dickens, P. (n.d.). Women be healthy: A curriculum for women with mental retardation & other developmental disabilities. Chapel Hill, NC: Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill and the NC Office on Disability and Health (NCODH).
The Women Be Healthy Curriculum was developed to enable women with mental retardation and other developmental disabilities to become more active participants in their health care. Its primary emphasis is teaching women about reproductive health and breast/cervical cancer screenings. The topics covered are relevant to any woman interested in increasing her knowledge about and becoming more comfortable with women’s health issues. The curriculum focuses on three components to help women become better health advocates: health education, anxiety reduction and assertiveness and empowerment training.
Information on what is needed to teach this curriculum as well as information on borrowing the core materials, go to: http://www.fpg.unc.edu/%7Encodh/WomensHealth/index.htm; a sample set of the curriculum is also available. The facilitator’s manual is free to North Carolina residents. Out of state residents may order one free copy, each additional copy may be purchased at $3.00 each. Email odhpubs@mail.fpg.unc.edu to order a copy.
Maxwell, J., Watts Belser, J., & David, D. (2007). A health handbook for women with disabilities. Berkeley: Hesperian Foundation.
Women with disabilities often discover that the social stigma of disability and inadequate care are greater barriers to health than the disabilities themselves. A Health Handbook for Women with Disabilities will help women with disabilities overcome these barriers and improve their general health, self-esteem, and abilities to care for themselves and participate in their communities.
This groundbreaking handbook was developed with the help and experience of women with disabilities in 42 countries—women whose disabilities include blindness, deafness, amputations, paralysis, learning difficulties, small stature, epilepsy, arthritis, and cerebral palsy.
This handbook is available for download at: http://www.hesperian.org/
publications_download_wwd.php
McAlearney, A. S., Reeves, K. W., Tatum, C., & Paskett, E. D. (2007, April). Cost as a barrier to screening mammography among underserved women. Ethnicity & Health, 12(2), 189-203.
Background. Breast cancer is a troublesome health problem, particularly among underserved and minority women. Early detection through screening mammography can reduce the impact of this disease, yet it remains underused.
Objective. We examined cost as a barrier to screening mammography and studied the accuracy of women’s perceptions of the cost of a mammogram among a rural, low-income, tri-racial (white, Native American and African American) population in need of a mammogram.
Design. We interviewed 897 women age 40 and older, asking about cost as a barrier to mammography and perceptions about the actual costs of a screening mammogram. Face-to-face interviews were conducted between 1998 and 2000 among women participating in a randomized, controlled study to evaluate a health education intervention to improve mammography screening rates in an underserved population. All data used in these analyses were from the baseline interviews.
Results. Cost acted as a barrier to screening mammography for a majority of the participants (53%). More than half of these women (52%), however, overestimated the cost of a screening mammogram, and overestimation of the cost was significantly related to mentioning cost as a barrier (OR 1.56, 95% CI 1.04-2.33). Higher estimates of out-of-pocket costs were associated with reporting cost as a barrier to mammography (OR 2.25, 95% CI 1.43-3.52 for $1-50 and OR 12.64, 95% CI 6.61-24.17 for >$50). Factors such as race, income and employment status were not related to reporting cost as a barrier to screening mammography.
Conclusions. Among a group of tri-racial, low-income, rural women who were in need of a mammogram, cost was a common barrier. Overestimating the cost, however, was significantly and positively associated with reporting cost as a barrier. Providing information about the actual cost women have to pay for mammograms may lessen the role of cost as a barrier to mammography screening, especially for underserved women, potentially improving utilization rates.
McCarthy, M. (2002, December 1). Going through the menopause: Perceptions and experiences of women with intellectual disability. Journal of Intellectual & Developmental Disability, 27(4), 281-295.
This article explores a heretofore neglected topic: the perceptions, experiences and support needs of women with intellectual disability as they go through the menopause. Findings are presented from semi-structured interviews with 15 women with mild to moderate intellectual disability aged 43-65 years. Levels of knowledge about what the menopause was, when it happened, and whether it happened to all women, were found to be generally low. More significantly, the majority of the women did not understand the significance of the menopause on a woman’s reproductive capacity. The women’s experiences of change and transition were on a predominantly physical level, with some emotional effects, but little or no psychological and social impact noted. The findings about menopausal changes are presented in a broader context of age-related issues and the impact of the women having relatively low levels of choice and autonomy is explored.
McDermott, S., Moran, R., Platt, T., & Dasari, S. (2007). Health conditions among women with a disability. Journal of Women’s Health, 16(5), 713-720.
Background: This study was designed to determine if the incidence of some common health conditions was higher among 770 women with a disability compared with 1097 women without a disability and 679 men with a disability in the same primary care medical practices.
Methods: This is a retrospective cohort study that used record review of individuals with sensory impairments (n = 117), developmental disabilities (n = 692), trauma-related impairments (n = 155), and psychiatric impairments (n = 485) and 1097 patients without a disability.
Results: Diabetes, hypertension, and obesity, three important predictors of morbidity and mortality, were not significantly more likely to occur in women with disabilities compared with others in the same medical practice. Dementia had higher hazard ratios (HRs) for women with sensory, developmental, and trauma disability. However, women with trauma disability had a significantly lower (HR) for dementia compared with men with the same disability. Women with sensory disability were at higher risk for transient ischemic attack (TIA) compared with women in the same practice without disability, and there was no difference in HRs compared with men with disability. Women with disability related to trauma were at higher risk for depression compared with women in the same practice without disability and compared with men with the same disability. Some conditions, such as congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD), have opportunities for prevention, as they are associated with smoking, physical inactivity, and diet.
Conclusions: Healthcare providers should be aware of risks associated with specific impairment groups so they can implement prevention and treatment strategies.
McGillin, L., & Kraft-Fine, C. (1998). Not just surviving: Women living a full life with a spinal cord injury [Video]. Boston: Fanlight Productions.
Only about twenty percent of all people with spinal cord injuries are women, and information about issues specific to them can be hard to come by. Women who are newly injured may feel isolated, and have difficulty obtaining the simplest information about managing day-to-day problems, let alone finding peers to talk with.
This video brings together four women who have been living with SCI for fifteen, twenty, even thirty years. They share insights into topics that include rehabilitation and working with healthcare professionals, appearance and sexuality, menstruation, contraception, pregnancy, parenting, and menopause. Not only do they provide useful information on the day-to-day practicalities of being a woman with a disability, they are also outstanding role models: women leading active, competent, full lives despite spinal cord injury. An important resource for groups focused on disabilities and women’s health, this video will also be a valuable tool to help sensitize healthcare students, professionals and rehabilitation staff to issues women confront after becoming disabled.
This video was produced with support from the American Association of Spinal Cord Injury Nurses.
McKay-Moffat, S. (2007). Disability in pregnancy and childbirth. Maryland Heights, MO: Elsevier.
This title is directed primarily towards health care professionals outside of the United States. A first in Midwifery publishing! No other book advises midwives on the special needs of mothers with disabilities. Although an increasing number of women with disabilities are having children, the needs of this minority group are not always being effectively met. Disability in Pregnancy and Childbirth provides essential practical information to healthcare professionals working with this group.
Milberger, S., LeRoy, B., Lachance, L., & Edelson, G. (2002, December). Osteoporosis and women with Down syndrome. Journal of Intellectual & Developmental Disability, 27(4), 273-280.
This one-year study of 23 women examined osteoporosis in postmenopausal women with Down syndrome. The participants had their bone mineral density measured in three sites (lumbar spine, hip and forearm) using dual energy X-ray absorptiometry. Each participant also completed a medical history self-report questionnaire. The findings indicate that the women tended to be inactive and they frequently had coexistent conditions (i.e., thyroid disease and seizure disorders) whose treatments may contribute to a reduction in bone mineral density. The results from the bone scans revealed Z-scores that were strikingly different from what would be expected in women in the US general population of the same age and ethnicity. Corresponding to the Z-scores were elevated relative risks for fracture. Eighty-seven per cent of the participants had osteopenia or osteoporosis in at least one of the three sites measured. The results highlight the need for intervention efforts targeted to aging women with Down syndrome.
Miller, A., & Dishon, S. (2006, March). Health-related quality of life in multiple sclerosis: The impact of disability, gender and employment status. Quality of Life Research, 15(2), 259-271.
Objectives: (1) Evaluate the impact of the patient charateristics of disability, gender and employment status on health-related quality of life (HRQOL) in multiple sclerosis (MS) and (2) Characterize the functional relationship between HRQOL and disability overall, and by gender and employment status. Methods: We assessed the HRQOL of 215 MS outpatients in our clinic using the MSQOL-54 and Fatigue Severity Scale (FSS), and that of 172 healthy controls, using the SF-36 (a subset of MSQOL-54). We compared QOL between MS subgroups defined by disability, gender and employment, and computed the linear and non-linear relationships between disability level measured by the Expanded Disability Status Scale (EDSS) and MSQOL-54 dimensions.
Results: QOL of MS patients measured by SF-36 is lower than controls, varying by QOL dimension with the greatest difference emerging for physical aspects of the disease. The relationship of physical disability, measured by EDSS, and all 14 MSQOL-54 dimensions and FSS is negative; for 12 of the 14 dimensions and FSS it is also non-linear. Non-linearity is most pronounced among women, who show a weak EDSS/QOL relatioship at higher levels of physical disability, suggesting women better able to “psychologically buffer” the debilitating aspects of MS. While employed have higher QOL than unemployed, the former are more affected by physical disability.
Conclusions: Multiple attributes, including disability, gender and employment status, affect QOL. QOL’s relationship with disability is complex, displaying non-linearity and interacting with patient characteristics. This has implication for QOL research methodology and provides insight into factors affecting patients’ perceptions of well-being.
Morrison, J. A., Friedman, L. A., Harlan, W. R., Harlan, L. C., Barton, B. A., Schreiber, G. B., & Klein, D. J. (2005). Development of the metabolic syndrome in black and white adolescent girls: A longitudinal assessment. Pediatrics, 116(5), 1178-1182
Background. The metabolic syndrome, associated with increased risk of type 2 diabetes mellitus and cardiovascular disease, begins to develop during adolescence.
Objective. We sought to identify early predictors of the presence of the syndrome at the ages of 18 and 19 years in black and white girls.
Methods. Using longitudinal data on participants from 2 centers in the National Heart, Lung, and Blood Institute Growth and Health Study, a 10-year cohort study, we applied cutoffs from the Adult Treatment Panel III to document changes in the prevalence of abnormal syndrome elements and the syndrome in girls aged 9 and 10 years, when cases were rare, and those aged 18 and 19 years, when prevalence had reached 3%. Longitudinal regression models identified early predictors for the presence of the syndrome.
Results. Only 1 girl of each race had 3 factors at ages 9 and 10 (0.2%), but 20 black girls (3.5%) and 12 white girls (2.3%) had the syndrome 10 years later. Low high-density lipoprotein cholesterol was prevalent throughout the period in both black and white girls. The prevalence of other variables was low at enrollment but increased during follow-up, except for abnormal triglyceride levels in black girls, which remained low throughout follow-up. In multivariate models, early measures of waist circumference and triglyceride level were significant predictors for development of the syndrome.
Conclusion. The strong association of central adiposity with the development of the metabolic syndrome suggests that early interventions aimed at managing preteen obesity could reduce risk of developing the syndrome.
Morrow, M. (2002, July/August). Challenges of change: Midlife, menopause and disability. A Friend Indeed, XIX(3). Winnipeg, MB: A Friend Indeed for Women in Menopause and Midlife.
This is one of few resources pertaining to women with disabilities and menopause. To order this issue of the newsletter, visit their web site: http://www.afriendindeed.ca
This article has also been reprinted online at http://www.cwhn.ca/resources/afi/disability.html
My body, my responsibility: A health education video for deaf women [Video]. (n.d.). Rochester: Deaf Wellness Center, University of Rochester Medical Center.
My Body, My Responsibility: A Health Education Video for Deaf Women is a 62-minute film. The film features deaf actresses in most roles (and a deaf ob-gyn surgeon!) and dialogue in American Sign Language throughout. It also has a spoken English voice-over and open captions (subtitles), so the film is accessible to hearing and hard-of-hearing people as well as sign language users. It covers topics including puberty, menstruation and related hygiene, pregnancy and labor, pregnancy prevention, birth control methods, and sexually transmitted diseases including HIV and how to be tested for HIV. This video fills a major gap in health education materials for deaf women and/or families with deaf women. It would be useful in deaf education settings, other deaf service settings, healthcare settings that serve deaf women, in families (where deaf and hearing members could watch/discuss it together), and in interpreter training programs.
National Women’s Health Resource Center. (2005). First annual health survey: Women talk. Red Bank, NJ: Author.
First Annual Health Survey: Women Talk presents findings from a national telephone survey of U.S. women ages 18 and older conducted in March 2005 to explore women’s knowledge about, attitudes toward, and perceptions of their health. The executive summary, published by the National Women’s Health Resource Center (NWHRC), presents key findings on women’s roles as health managers, their awareness of and attention to their own health, health information resources, and health perceptions by race and socioeconomic status. NWHRC is also launching an educational initiative based on the survey findings called Take 10 to T.A.L.K. The campaign features a wallet-size card (in English and Spanish) with four questions that women should ask when visiting their health professionals. The press release, executive summary, wallet card, and other information are available at http://www.healthywomen.org/womentalk/index.html.
National Women’s Law Center. (2004). Making the grade on women’s health: A national and state-by-state report card 2004. Washington, DC: Author. Retrieved March 2, 2005 from http://www.nwlc.org/details.cfm?id=1861§ion=health
This is the third in a series assessing the overall health of women at the national and state levels. The Report Card is designed to promote the health and well-being of women in the United States by providing a comprehensive assessment of women’s health. It evaluates 34 health status indicators and 67 health policy indicators, and assesses the nation’s progress, or lack thereof, state-by-state, in reaching key benchmarks related to the status of women’s health. The Report Card also provides an important overview of key disparities in the health of women based on race, ethnicity, sexual orientation, disability status, and other facts.
North Carolina Office on Disability and Health and the Massachusetts Office on Health and Disability. (2003). The health promotion resource guide: Promoting the health and wellness of people with disabilities. Retrieved February 21, 2005 from http://www.fpg.unc.edu/%7Encodh/pdfs/Health%20Resource%20Guide.pdf
This guide provides health educators, service providers, and program planners a carefully selected collection of resources that address accessibility, communication, and topic specific health promotion. There are sections on Women’s Health, Sexuality & Relationships, and Parenting. A plain text/HTML version is also available at: http://www.fpg.unc.edu/%7Encodh/HTMLs/Health%20Promotion%20Resource%20Guide.htm
Nosek, M. A., Hughes, R. B., Howland, C. A., Young, M. E., Mullen, P. D., & Shelton, M. L. (2004, January/March). The meaning of health for women with physical disabilities: A qualitative analysis. In J. Lancaster (Ed.), Crossing barriers to health: Disability issues within the family and community [Feature Issue]. Family and Community Health, 27(1), 6-21.
Researchers used qualitative research methods to explore determinants of and barriers to the health of women with physical disabilities. Semistructured, open-ended interviews were conducted with one focus group (n = 9) and 9 individual women with various physical disabilities. Participants: (1) defined physical health as a correlate of functional capacity; (2) noted the importance of a positive mental state; (3) recognized the effect of having or lacking social support; (4) described the role of health behaviors in health promotion, as adapted to their functional limitations; and (5) described problems with their medical practitioners’ lack of knowledge. Barriers included certain disability characteristics, stress, inadequate social support, societal attitudes, and lack of resources.
Nosek, M.A., Hughes, R. B., Petersen, N.J., Taylor, H.B., Robinson-Whelen, S., Byrne, M., & Morgan R. (2006, March). Secondary conditions in a community-based sample of women with physical disabilities over a 1-year period. Archives of Physical Medicine and Rehabilitation, 87(3), 320-327.
Objective: To examine prevalence and predictors of secondary conditions in women with physical disabilities.
Design: Cross-sectional.
Setting: Women were recruited through private and public health clinics and various community organizations.
Participants: A sample of 443 predominantly ethnic minority women with physical disabilities.
Main Outcome Measure: Health Conditions Checklist interference score.
Results: Aggregated data over a 1-year period showed that nearly the entire sample reported interference from pain (94.5%) and fatigue (93.7%) and that at least three quarters of the sample reported problems with spasticity (85.4%), weakness (81.8%), sleep problems (80.2%), vision impairment (77.9%), and circulatory problems (77.9%). Obesity was substantially more prevalent in this sample (47.6%) than in the general population of women (34.0%). The mean number of secondary conditions per woman ± standard deviation was 14.6±6.2 (range, 1−42), with 75% of the sample endorsing 10 or more conditions. On average, women reported experiencing 5.7±4.03 (range, 0−20) conditions that they rated as significant or chronic. A third (33.4%) of the variance in interference scores was accounted for in the regression analysis, with significant variance accounted for by race, disability type (women with joint and connective tissue disorders and women with postpolio reported the highest overall interference scores), greater functional limitations, and lower levels of general mental health.
Conclusions: Secondary conditions in women with physical disabilities are substantially more problematic than reported previously in the literature. Further research is needed to determine health disparities of women with and without disabilities. Measurement issues and the clinical relevance of these findings are discussed.
Nosek, M. A., Hughes, R. B., Swedlund, N., Taylor, H. B., & Swank, P.
(2003, April). Self-esteem and women with disabilities. Social Science & Medicine, 56(8), 1737-1747.
This study examines the sense of self of women with physical disabilities in terms of self-esteem, self-cognition (perceptions of how others see them), and social isolation. It was hypothesized that these variables mediate the relation of precursor variables (age, education, severity of disability, and childhood experiences, including overprotection, familial affection, and school environment) and outcomes (intimacy, employment, and health promoting behaviors). Data were gathered from a sample of 881 community-dwelling women in the USA, 475 with a variety of mild to severe physical disabilities, and 406 without disabilities. Correlation analyses indicated that the women with disabilities had significantly lower self-cognition and self-esteem, and greater social isolation than the women without disabilities, as well as significantly less education, more overprotection during childhood, poorer quality of intimate relationships, and lower rates of salaried employment. Path analysis indicated that each of the sense of self mediators was significantly related to the outcome of intimacy, that both social isolation and self-esteem were significantly related to health promoting behaviors, and that only self-esteem was significantly related to employment. Respondents who were older, less disabled, less educated, less over-protected, and had more affection shown in the home tended to feel that others saw them more positively. Women with positive school environments, less over-protection, and more affection in the home experienced less social isolation; age, education, and disability severity were not significantly related to social isolation. Older respondents with less disability, a more positive school environment, less over-protection, and more affection in the home tended to have greater self-esteem; education was not significantly related to self-esteem. Older respondents tended to report less intimacy. Younger, more educated, and less disabled respondents were significantly more likely to be employed. More highly educated respondents reported engaging in more health promoting behaviors.
Odette, F., Yoshida, K. K., Israel, P., Li, A., Ullman, D., Colontonio, A., Maclean, H., & Locker, D. (2003, February). Barriers to wellness activities for Canadian women with physical disabilities. Health Care for Women International, 24(2), 125-134.
Although there is a great deal of interest in women’s health, research on the health and well being of women with disabilities has not increased. In this article we present internal and structural barriers to wellness activities experienced by women with disabilities. We also discuss women’s actual and recommended strategies to address these barriers. Data were collected in six focus groups in urban and rural Ontario, Canada. The participants represented a diversity of disability, age, and ethnoracial backgrounds. Our findings suggest that individual and structural barriers exist for the women, with structural barriers (physical, informational, and systemic access) being predominant. Barriers prevented women from engaging in desired wellness activities. Women discussed actual strategies to address these barriers, such as collective efforts to buy nutritious foods and recommendations to create greater access (e.g., increase health professionals’ training in disability issues).
Parish, S. L., & Ellison-Martin, M. J. (2007, Fall). Health-care access of women Medicaid recipients: Evidence of disability-based disparities. Journal of Disability Policy Studies, 18(2), 109-116.
Little is known about the health care received by women with disabilities, who comprise a substantial subset of the population. This article describes the health care of a national sample of low-income female Medicaid recipients. Despite having similar potential for care (health insurance, usual source of care, and having a physician as a usual source of care) as compared to nondisabled women, women with disabilities had substantially worse rates of receiving medical care and medication when they were needed and of cervical cancer screenings. Women with disabilities were also much less likely to be satisfied with their care than were nondisabled women. These results support calls to mandate quality-based reimbursement incentives within Medicaid, specifically for women with disabilities.
Parish, S. L., & Huh, J. (2006, February). Health care for women with disabilities: Population-based evidence of disparities. Health & Social Work, 31(1), 7-15.
Despite having similar or better potential access to health care, women with disabilities experience worse health care and worse preventive care than nondisabled women. This study examined the health care of a national probability sample of 8,721 disabled and 45,522 nondisabled women living in the United States. Logistic regression models, adjusted for age and household income, were estimated for eight measures of health care, including three measures of potential access to care, two measures of receipt of preventive services, and postponement of care. Findings signal potentially serious consequences for women with disabilities, who require care at higher rates than their nondisabled counterparts and are at increased risk of developing secondary conditions if their care needs are not met.
Parish, S. L., & Whisnant Saville, A. (2006, August). Women with cognitive limitations living in the community: Evidence of disability-based disparities in health care. Mental Retardation, 44(4), 249–259.
Using data from the Medical Expenditure Panel Survey for 2000 and 2002, we compared potential and realized use of health care for a national sample of working-age women with cognitive disabilities. Despite having similar likelihoods of potential access to health care as compared to nondisabled women, they had markedly worse rates of receiving cervical cancer and breast cancer screenings, similar rates of routine check-ups, and yet had better rates of receipt of influenza shots. They were also less likely to be satisfied with their medical care than were nondisabled women. Policy recommendations are suggested to address the disability-based disparities in reproductive health care for women with cognitive limitations.
Peel, E., & Thomson, M. (2009). Lesbian, Gay, Bisexual, Trans and Queer Health Psychology [Special issue]. Feminism & Psychology, 19(4).
“Gender has been an important and profitable lens through which the bio- and social sciences have sought to understand health, its differentials and inequalities. While health is clearly multi-factorial, gender has been recognized as an important determinant of health profiles and feminist principles of equity and inclusiveness have long been incorporated into health psychology (Brown Travis et al., 1991). Women’s health is an accepted sub-discipline in many fields and whilst men’s health remains a somewhat marginal concern (although see Courtney, 2000; Thomson, 2008), it is (generally) accepted that ‘the doing of health is a form of doing gender’ (Saltonstall, 1993: 12). This special issue aims to build upon this work by seeking to explore the value of sexuality as an axis of study in health psychology” (p. 427).
Pendergrass, S., & Nosek, P. (2000). Reproductive health care for women with disabilities: A guide from the Center for Research on Women with Disabilities at Baylor College of Medicine. Houston, TX: Center for Research on Women with Disabilities (CROWD). Retrieved December 15, 2004 from http://www.bcm.edu/crowd/reprod/modules/home.html
“This guide is written to inform you and the millions of other women with disabilities about reproductive health care. It is written to specifically address your concerns. Like eating right and keeping fit, reproductive health care helps you stay active so you can do the things you want to do. It is an essential service that you and every other woman need. Unfortunately, a recent study showed that women with physical disabilities are less likely to receive reproductive health care and are often denied services because of their disabilities. You can help ensure that you get the quality reproductive health care that you deserve by learning about your body and your needs. This guide is written to help you do just that.”
Pendergrass, S., Nosek, M.A., & Holcomb, J. D. (2001) Design and evaluation of an Internet site to educate women with disabilities on reproductive health care. In M. Nosek (Ed.), Feature issue on The Center for Research on Women with Disabilities (CROWD), Part I. Sexuality and Disability, 19(1), 71-83.
Women with disabilities often do not receive adequate reproductive health care. In order to improve their health, they need to be better informed. The purpose of this pilot study was to determine if the Internet can effectively be used to educate women with disabilities about reproductive health. A time-series design was utilized in which the knowledge of each participant was tested before and after she toured an Internet site on reproductive health. The women were also surveyed for demographic data and for their comments on the site. To be included in the study, a woman had to be over the age of eighteen and have a mobility impairment. Twenty-six women from the United States and Canada participated in the study. Like other Internet users, they were predominately white, highly educated, and relatively affluent. They used the Internet primarily for communication (e-mail). One of the most significant findings in this study was that, although the women surveyed were highly educated, they had fundamental deficits in their knowledge of reproductive health. Thus, although these women did not match other women with disabilities demographically, they shared a need for education on reproductive health. A second significant finding was that the web site was effective in increasing the participants’ knowledge of reproductive health. This was indicated by the statistically significant 10.00% increase in post-test scores over pre-test scores and by the women’s positive feedback. Thus, the Internet site developed for this pilot study did prove to be a valuable education tool. As the Internet continues to expand and users continue to diversify, health education sites of this type should become even more effective in helping women with disabilities to break down traditional barriers and lead healthier lives.
Piotrowski, K,. & Snell, L. (2007). Health needs of women with disabilities
across the lifespan. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 36, 79-87.
Women with disabilities experience a variety of unique health needs from adolescence to older age. They require compassionate and comprehensive health care services to manage their physical disabilities and to prevent secondary conditions. Unfortunately, many women with disabilities encounter attitudinal, informational, environmental, and geographic barriers as they seek access to health care. A variety of measures can be implemented to overcome these barriers and to improve the quality of health care that women with disabilities receive.
Raik, B. L., Miller, F. G., & Fins, J. J. (2004, March). Screening and cognitive impairment: Ethics of forgoing mammography in older women. Journal of the American Geriatrics Society, 52(3), 440-444.
Mammographic screening for breast cancer in cognitively impaired women poses significant ethical questions. Many woman with dementia should not be screened because of the greater harm than benefits and the difficulty in obtaining informed consent. This article reviews the current controversy about mammography and then suggests a risk/benefit analysis for this vulnerable population. Autonomy, decision-making capacity, and the roles of surrogates and physicians are considered, as are ageism and the risk of undertreatment. The harm of overdiagnosis and subsequent overtreatment for women who are cognitively impaired, have comorbidity and a limited life span are outlined. In these cases, the burdens of mammography outweigh the benefits. For women with early cognitive impairment and longer life expectancies, the potential benefits may outweigh the harms. A decision-making process by the patient, proxy, and practitioner that takes account of foreseeable risks and benefits, patient capacity and preferences, and the effect of this screening intervention on quality of life is outlined.
Removing barriers to mammography for women with physical disabilities [Video]. (n.d.). New York: United Cerebral Palsy of New York City, Inc.
Removing Barriers to Mammography For Women with Physical Disabilities is a 15-minute, broadcast quality educational video/DVD that explains the importance of mammography and the unique challenges of routine breast examinations and mammograms for women with physical disabilities. It highlights the equipment and procedures required for high quality mammograms, and answers questions about how long the procedure takes, what might occur during the mammogram and how it feels. This video helps eliminate the myths and misconceptions that are associated with mammograms. It is a valuable education tool that provides information, which can help save lives. UCP is grateful for the support of the Susan G. Komen Breast Cancer Foundation, which helped support this video. For more information, go to: http://www.ucpnyc.org/publications/ucpvideos.cfm#6
Riddell, L., Greenberg, K., Meister, J., & Kornelsen, J. (2003). We’re women, too: Identifying barriers to gynecologic and breast health care for women with disabilities. Vancouver: British Columbia Centre of Excellence for Women’s Health. Available: http://www.bccewh.bc.ca/publications-resources/documents/werewomentoo.pdf.
“The purpose of the research study…was to address the following questions:
- To what extent do women with disabilities regularly receive screening for breast and cervical cancer?
- What are the barriers that prevent women with disabilities from receiving this care?
- How can we use this information to improve screening?
This study was conceived as community action research to be led by women with
disabilities and to centre on women’s experiences of living with a disability or disabilities” (pp. 1-2).
Rimmer, J. H., Rubin, S. S., & Braddock, D. (2000, February). Barriers to exercise in African American women with physical disabilities. Archives of Physical Medicine and Rehabilitation, 81(2) 182-188.
Objective: To examine what factors African American women with one or more physical disabilities perceive as barriers to exercise and how they rank them.
Study Design: Data were collected through telephone interview using a newly developed instrument (Barriers to Physical Exercise and Disability [B-PED]) that addressed issues related to physical activity and the subjects’ disability.
Subjects: Fifty subjects were asked questions about their participation and interest in structured exercise.
Results: The four major barriers were cost of the exercise program (84.2%), lack of energy (65.8%), transportation (60.5%), and not knowing where to exercise (57.9%). Barriers commonly reported in nondisabled persons (eg, lack of time, boredom, too lazy) were not observed in our sample. Only 11% of the subjects reported that they were not interested in starting an exercise program. The majority of subjects (81.5%) wanted to join an exercise program but were restricted by the barriers reported.
Conclusion: African American women with a physical disability are interested in becoming more active but are limited in doing so because of their inability to overcome several barriers to increased physical activity participation.
Rimmer, J. H., Rubin, S. S., Braddock, D., & Hedman, G. (1999, April). Physical activity patterns of African-American women with a severe physical disability. Medicine & Science in Sports & Exercise, 31(4), 613-618.
Purpose: The purpose of this study was to survey the exercise and activity patterns of African-American women with severe physical disabilities (N = 50).
Methods: The Physical Activity and Disability Survey (PADS) was created for subjects who have a severe limitation in movement and function (e.g., limited ability to stand or walk, needs an assistive aid to ambulate, needs assistance with activities of daily living). Reliability data were obtained on the PADS for interrater, test-retest, and internal consistency on the two subscales (Exercise and Activity). The Exercise subscale had an interrater reliability of 0.83 and test/retest reliability of 0.85. The Activity subscale had an interrater reliability of 0.68 and test/retest reliability of 0.66. Cronbach’s alpha for internal consistency was 0.78 for the Exercise subscale and 0.68 for the Activity subscale.
Results: Results showed very low levels of exercise and general activity patterns in African-American women with physical disabilities. Only 8.2% of the sample participated in leisure-time physical activity, and only 10% engaged in aerobic exercise three or more days per week for at least 15 min. Unstructured physical activity (e.g., work-related activity, housework, gardening, shopping) was nearly absent.
Conclusion: Our data suggest that the extremely low levels of self-reported physical activity in African-American women with severe physical disabilities expose them to a higher risk of secondary health conditions.
Schoen, C., Simantov, E., Gross, R., Brammli, S., & Leiman, J. (2003). Disparities in women’s health and health care experiences in the United States and Israel: Findings from 1998 National Women’s Health Surveys. Women and Health, 37(1), 49-70.
Objective and Methods: Using data from bi-national 1998 surveys of adult women in the U.S. and in Israel, this article examines health, access, and care experiences among women in two countries with very different health care systems. We examine how well each country’s system serves those vulnerable due to lower socio-economic status. The Israeli health care system-characterized by universal coverage for all its residents-relies on a system of competing health funds that employ many features typical of U.S. managed care plans. The analysis explores the extent to which such a system helps to equalize access experiences with contrasts to the experiences of U.S. women.
Findings: We find that U.S. and Israeli women report similar rates of disability and chronic conditions with prevalence of health problems sharply higher for low income and less educated women. We also find disparities in access: women in both countries reported unequal access experiences by education and income. In Israel, these experiences appear to be linked to health plan structural features rather than cost barriers.
Conclusion: The findings indicate that achieving more equitable access to health care requires attention to non-financial as well as financial barriers to care. Despite the lack of financial barriers to care in Israel, administrative controls typical of managed care organizations appear to make health care systems difficult to navigate for low income and less educated women. The finding that disparities in health persist in a country with universal coverage indicates that improving women’s health will require attention to broader social influences on health as well as improving access to health care.
Schootman, M., & Jeffe, D. B. (2003, March). Identifying factors associated with disability-related differences in breast cancer screening. Cancer Causes and Control, 14(2), 97-107.
Objective: The purpose of this study was to identify factors that could explain breast cancer underutilization among women age 40 and older with disabilities.
Methods: The data are part of the 1996 Medical Expenditure Panel Survey (MEPS), a nationally representative sample of medical care use and expenditures in the United States. Two different definitions of disability were used: limitations in activities of daily living (ADL) and limitations in instrumental activities of daily living (IADL). Annual mammography was used as the outcome measure. The data are restricted to noninstitutionalized women at least 40 years of age.
Results: Crude odds ratios showed that women with long-term limitations in their ADLs or IADLs were less likely to be screened for breast cancer compared to those without such limitations. These associations remained while controlling for possible confounders and were observed among women age 40 or older, those 50–69, and among women 70 years of age and older.
Conclusions: Reasons for the underutilization of breast cancer screening among women with long-term disabilities remain elusive. Future studies need to examine additional factors in order to improve screening use, especially among women with long-term disabilities who are 50–69 years of age, for whom screening has been shown to be beneficial in terms of reduced risk of mortality from breast cancer.
Schopp, L. H., Sanford, T. C., Hagglund, K. J., Gay, J. W., & Coatney, M. A. (2002, March). Removing service barriers for women with physical disabilities: Promoting accessibility in the gynecologic care setting. Journal of Midwifery & Women’s Health, 47(2), 74-79.
Although women with disabilities constitute a substantial segment of the population, their gynecologic health care needs often go unrecognized or untreated. Women with disabilities encounter a variety of obstacles to receiving health services including attitudinal, environmental, economic, and informational barriers. Standard screening and preventive services, such as pelvic examinations and mammograms, can be especially difficult to obtain, potentially placing women with disabilities at greater risk for diseases such as breast cancer and cervical cancer. This article reviews the current status of gynecologic care for women with disabilities and provides strategies for women’s health care providers seeking to increase the accessibility of their practice settings.
Schopp, L. H., Shigaki, C. L., Johnstone, B., & Kirkpatrick, H. A. (2001). Gender differences in cognitive and emotional adjustment to traumatic brain injury. Journal of Clinical Psychology in Medical Settings, 8(3), 181-188.
Study examines gender differences in outcome following traumatic brain injury (TBI). Participants were 262 males and 140 females with TBI referred for neuropsychological testing. Cognitive functioning was measured in terms of intelligence, memory and attention, processing speed, and cognitive flexibility. Emotional functioning was measured in terms of depression and general emotional distress. In general, men had lower scores on memory measures, greater estimated decline in cognitive flexibility, and greater emotional distress. Women had greater estimated decline in intelligence and attention, and higher levels of depression. Research and assessment recommendations are discussed.
Schrager, S. (2004). Osteoporosis in women with disabilities. Journal of Women’s Health, 13(4), 431-437.
Women with physical and cognitive disabilities are at high risk for osteoporosis and osteoporosis-related fractures. Women with physical disabilities frequently are non-ambulatory and have bone loss due to immobility. Women with cognitive disabilities have high rates of osteopenia and osteoporosis, likely partially due to high rates of anticonvulsant medication use. Women with Down syndrome are at especially high risk of osteopenia and osteoporosis, possibly because of lower peak bone density levels. Prevention of osteoporosis and related fractures in this population includes population-based measures, such as calcium and vitamin D supplementation and risk-based screening procedures. Primary care providers and specialists need to prioritize osteoporosis prevention strategies when taking care of women with disabilities. Future research is needed to determine optimal screening and prevention strategies in this very high risk population.
Servais, L., Jacques, D., Leach, R., Conod, L., Hoyois, P., Dan, B., & Roussaux, J. P. (2002, February). Contraception of women with intellectual disability: prevalence and determinants. Journal of Intellectual Disability Research, 46(2), 108-119.
Background: The contraception of women with intellectual disability (ID) is a major concern for caregivers. However, the prevalence of contraception and the frequency of use of different methods (e.g. sterilization) remain generally unknown. Moreover, indications specific to women with ID are controversial.
Methods: The present authors conducted a population-based study among 97% of the women with ID aged between 18 and 46 years attending government-funded facilities in Brussels and the nearby province of Walloon Brabant in Belgium.
Results: Out of 397 subjects, 40.8% did not use any contraceptive method, 22.2% were sterilized, 18.4% used an oral contraceptive agent, 17.6% used depotmedroxyprogesterone acetate and 1% used an intrauterine device. These figures differ widely from those of the general Belgian population. Binary logistic regression for ‘contraceptive utilization’ showed the strong influence of institutional factors such as sleeping environment (i.e. institutional or parental), sexual relationship policy and contraception policy. Having or having had a boyfriend is also correlated with a stronger probability of contraceptive use. Other factors have a smaller influence (e.g. a milder level of ID). Very few factors, none of which are medical, are correlated with an increased use of a specific method. The present results are discussed in the light of the general medical application of contraception and the commonly assumed specific indications for women with ID.
Shaevel, L. J. (1997, Winter). Health care services for women with disabilities. Disability Studies Quarterly, 17(1), 12-21.
”My purpose here will be to explore these new views of (1) discrimination, (2) civil rights, and (3) self-directed services that are working to shape a new future in health care services for women with disabilities.”
Shin, J., & Moon, S. (2008, July-August). Quality of care and role of health insurance among non-elderly women with disabilities. Women’s Health Issues, 18(4), 238-248.
Objectives: We examined differences in the quality of health care provided by usual source of care providers between women with and without disabilities in the United States. The role of health insurance in ensuring equitable quality of care for women with disabilities was investigated.
Methods: A national sample of 12,199 women aged 18–64 was drawn from the 2002 Medical Expenditure Panel Survey. Descriptive and multivariate analyses were performed to investigate the interactive associations of disability and insurance coverage with accessibility, satisfaction and adequacy of care among women.
Results: Compared with women without disabilities, women with disabilities were more likely to experience lower quality of care in terms of accessibility of care, satisfaction with care, and adequate receipt of care. This diminished quality of care for women with disabilities was alleviated, but only to a limited extent, by health insurance coverage. A significant difference remained in the quality of care between the 2 insured subgroups.
Conclusions: Having health insurance was strongly associated with improved access to care and reduced unmet or delayed care among women with disabilities in the United States. In addition to an expansion of public insurance program eligibility, the quality of care provided under the public insurance system needs to be ensured to maximize appropriate and timely care for women with disabilities.
Slewa-Younan, S., Green, A. M., Baguley, I. J., Gurka, J. A., & Marosszeky, J. E. (2004). Sex difference in injury severity and outcome measures after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 85(3), 376-379.
Study examined the effects of gender on various measures of injury severity and outcome after rehabilitation in a matched sample of men and women with traumatic brain injury (TBI). Retrospective data was obtained from a database that contains information routinely collected on all patients admitted for inpatient rehabilitation. Analysis revealed that men had significantly greater levels of injury severity and length of posttraumatic amnesia than women. No significant differences were found in outcome measures or injuries not associated with the central nervous system.
Smeltzer, S. C. (2006, January/March). Preventive health screening for breast and cervical cancer and osteoporosis in women with physical disabilities. In A. Stuifbergen (Ed.), Promoting Health in Persons with Chronic and Disabling Conditions [Feature Issue]. Family & Community Health, 29(1), Supplement: 35S-43S.
Although the Americans with Disabilities Act was enacted 15 years ago in an effort to improve access of people with disabilities to a broad range of services, women with physical disabilities continue to receive less preventive health screening than women without disabilities and less than is recommended. Furthermore, women with more severe disabilities undergo less screening than those with mild or moderate severity of disability. This article reviews findings of studies on health screening for breast and cervical cancer and osteoporosis in women with physical disabilities and identifies practice and research implications on the basis of those findings to improve the health status of women with physical disabilities.
Smeltzer, S. C., Sharts-Hopko, N. C., Ott, B. B., Zimmerman,V., & Duffin, J.
(2007, June). Perspectives of women with disabilities on reaching those who are hard to reach. Journal of Neuroscience Nursing, 39(3), 163-171.
Healthcare needs of women with disabilities are often neglected, even for women who are well connected to the community and to the healthcare system. So-called “hard-to-reach” women, whose degree of disability impedes use of community resources, have even greater difficulty obtaining health care. The purpose of this study was to gain insight into the perceptions of women with mobility and sensory limitations about several healthcare issues that may affect them: barriers to obtaining care, sources of information about health issues, ways to improve access to care, and ways to help hard-to-reach women overcome barriers to health care and health information. Researchers conducted six focus groups, comprising 43 women with limitations of mobility, hearing, or vision. To validate the women’s input, researchers conducted two additional focus groups: the first comprised female physicians with special interest in the health care of women with disabilities, and the second included professional administrative staff of agencies that provide services for people with disabilities. In several cases, members of the physician and agency focus groups were themselves women with disabilities. In addition, 16 women with disabilities participated in an online survey; their responses were used to validate the findings of the face-to-face focus groups. Transcribed data were content analyzed and 10 themes identified. Seven of those themes are discussed in this article: communication barriers; lack of knowledge and awareness among healthcare providers; access issues; working the system; system issues; outreach to healthcare providers; and reaching hard-to-reach women. The findings of this study can provide direction to development of more effective outreach to hard-to-reach women with disabilities, resulting in better integration of healthcare services for this population.
Smith, D. L., & Ruiz, M. S. (2009, October-December). Perceived disparities in access to health care due to cost for women with disabilities. Journal of Rehabilitation, 75(4), 3-10.
This study examined the relationship between disability, gender and access to physician services due to cost using data from the 2005 Behavioral Risk Factor Surveillance System. Results showed that women with disabilities are less likely than women without disabilities and men with disabilities to report not having seen a physician due to cost. A person with a disability is twice as likely to report not having seen a physician due to cost and women are approximately one and one half times as likely to report not having seen a physician due to cost. Implications for rehabilitation professionals focus on socioeconomic factors such as education, employment and training to increase income and improve access to health plans that provide access to physician services.
Sonpal-Valias, N. (1998, Decmeber). Health of women with developmental disabilities in midlife – Preliminary findings. Rehabilitation Review, 9(12). Retrieved May 5, 2005 from: http://www.vrri.org/rhb1298.htm
“What are the health concerns of midlife women with developmental disabilities? What factors do they think impact on health? These are some of the questions we asked during a study to explore the health issues of women with developmental disabilities aged 40-65 years. The study is conducted as a collaboration between the VRRI and WHEALTH: The Alberta Midlife Women’s Health Study. In this Review, we present some of the preliminary findings from the study.”
Steinberg, A. G., Wiggins, E. A., Barmada, C. H., & Sullivan, V. J. (2002, October). Deaf women: Experiences and perceptions of healthcare system access. Journal of Women’s Health and Gender-Based Medicine, 11(8), 729-741.
Background: The authors investigated the knowledge, attitudes, and healthcare experiences of Deaf women.
Methods: Interviews with 45 deaf women who participated in focus groups in American Sign Language were translated, transcribed, and analyzed. Deaf women’s understanding of women’s health issues, knowledge of health vocabulary in both English and American Sign Language, common health concerns among Deaf women, and issues of access to information, including pathways and barriers, were examined. As a qualitative study, the results of this investigation are limited and should be viewed as exploratory.
Results: A lack of health knowledge was evident, including little understanding of the meaning or value of cancer screening, mammography, or Pap smears; purposes of prescribed medications, such as hormone replacement therapy (HRT); or necessity for other medical or surgical interventions. Negative experiences and avoidance or nonuse of health services were reported, largely due to the lack of a common language with healthcare providers. Insensitive behaviors were also described. Positive experiences and increased access to health information were reported with practitioners who used qualified interpreters. Providers who demonstrated minimal signing skills, a willingness to use paper and pen, and sensitivity to improving communication were appreciated.
Conclusions: Deaf women have unique cultural and linguistic issues that affect healthcare experiences. Improved access to health information may be achieved with specialized resource materials, improved prevention and targeted intervention strategies, and self-advocacy skills development. Healthcare providers must be trained to become more effective communicators with Deaf patients and to use qualified interpreters to assure access to healthcare for Deaf women.
Stewart, J. R., & Prestin, E. I. (1999). Women with addictions and other disabilities: Recommendations for rehabilitation counselors. The Rehabilitation Professional, 7(5), 31-37.
Article providing pertinent information and recommendations for rehabilitation professionals who work with women with disabilities who are also chemically dependent. Topics covered include how women become addicted, the lifestyles of women with disabilities who are addicts, medical/biological and emotional/psychological effects of substance abuse on women with disabilities, and how rehabilitation professionals can promote successful rehabilitation.
Szalda-Petree, A., Seekins, T., & Innes, B. (1999, June). Ruralfacts: Women with disabilities: Employment, income, and health. Missoula, MT: Developmental Disabilities Health Promotion Project, The University of Montana Rural Institute. Retrieved April 8, 2005 from http://rtc.ruralinstitute.umt.edu/RuDis/DisWomenFact.htm
This fact sheet provides statistics and briefly discusses how employment and health can be more difficult for women with disabilities to access in rural communities.
Table manners, a guide to the pelvic examination for disabled women and health care providers. (1991, January). San Francisco: Planned Parenthood—Golden Gate.
“This booklet covers ‘Preparing for the Pelvic Exam,’ ‘Alternative positions for the pelvic exam,’ ‘Getting on the Table,’ ‘Special Concerns,’ and ‘Patient’s Rights and Responsibilities.’ Written by two physically disabled women, Table Manners is intended to educate both disabled women and clinic staff. This large format, comprehensive booklet includes multiple drawings and covers a variety of disabilities and conflicts that might arise during reproductive health exams.” To order, go to: http://www.ppgg.org/store/viewitems.asp?category=1&categoryName=Brochures.
Tanjasiri, S. P., Kagawa-Singer, M. & Nguyen, T. (2002). Collaborative research as an essential component for addressing cancer disparities among Southeast Asian and Pacific Islander Women. Health Promotion Practice, 3(2), 144-154.
A fundamental component of community-based health promotion efforts to eliminate disparities is the mobilization of community involvement to address not only individual but also systemic and political causes of inequalities in health. The participatory action research (PAR) paradigm is well suited to address these multilevel inequalities in research and evaluation experienced by many ethnic and racial communities. In this article, a case study of a project to reduce health disparities in breast and cervical cancer among seven Southeast Asian and Pacific Islander communities in Southern California is presented. The authors applied a PAR framework to the process of needs assessment and program planning to understand and address the complex and multilevel factors that contribute to the problem of disparate breast and cervical cancer screening rates in these communities. Finally, the authors describe the lessons that were learned about how to promote collaborative research as an essential element in the design of projects and studies to address ethnic disparities in health outcomes for breast and cervical cancer.
Taylor, M., & Carlson, G. (1993). The legal trends: Implications for menstruation/fertility management for young women who have an intellectual impairment. International Journal of Disability, Development, and Education, 40(2), 133-158.
This article reviews the Family Court of Australia cases concerning the hysterectomies performed on premenarchal women who have intellectual disabilities. The article discusses the implications of these surgeries on women who have an intellectual disability, and while the article is based on Australian cases, much can be applied to women in other countries.
Taub, D. E., McLorg, P. A., & Bartnick, A. K. (2009, March). Physical and social barriers to social relationships: Voices of rural disabled women in the USA. Disability & Society, 24(2), 201-215.
Through exploring the lived experiences of disabled women, this study investigates how physical and social barriers affect their social relationships. In-depth tape-recorded interviews investigating a variety of social and interpersonal issues were conducted with 24 women with physical or visual impairments who lived in a rural region of the midwestern USA. Using content analysis, the researchers examined interview data for common themes and patterns relating to social relationships. The findings indicate that physical barriers, related to the physical environment and personal physicality, along with social barriers, involving preconceptions of others about impairment and restrictions in personal networks, hamper the initiation and maintenance of social relationships. Further, the experiences of this group of disabled women corresponded most closely with the premises of a social relational understanding of disability.
Tezzoni, L. I., McCarthy, E. P., Davis, R. B., Harris-David, L., & O’Day, B. (2001). Use of screening and preventive services among women with disabilities. American Journal of Medical Quality, 16(4), 135-144.
Roughly 54 million Americans have some disability; at older ages, women are more likely to be disabled than men. Many people with disabilities today live virtually normal life spans, and therefore routine screening and preventive services are essential to their overall quality of care. We used the 1994-1995 National Health Interview Survey (NHIS), with Disability, Family Resources, and Healthy People 2000 supplements, to examine screening and preventive service use for adult women with disabilities living in the community-about 18.4% of women (estimated 18.28 million). Disability was associated with higher age-adjusted rates of: poverty; living alone; low education; inability to work; obesity; and being frequently depressed or anxious. Disabled women generally reported screening and preventive services at rates comparable to all women. Women with major lower extremity mobility difficulties had much lower adjusted odds of Papanicolaou smears (odds ratio, 0.6; 95% confidence interval, 0.4-0.9), mammograms (odds ratio, 0.7; 95% confidence interval, 0.5-0.9), and smoking queries (odds ratio, 0.6; 95% confidence interval, 0.5-0.8). Various approaches exist to improve access for disabled women to health care services.
Thierry, J. M. (2006, September). The importance of preconception care for women with disabilities. Maternal and Child Health Journal, 10(Supplement 1), 175-176.
Overall estimates of the number of women with disabilities in the United States range from 16.8 to 28.6 million, or approximately one in every five women. A large percentage of these women are in their reproductive years, and they often encounter greater obstacles to receiving health care than women without disabilities. Some disabling conditions, such as spinal cord injury (SCI) and multiple sclerosis (MS), have low prevalence rates but are more common in the reproductive age group. Such conditions are often associated with a greater severity of disability and increased need for specialized services, including prenatal care. Health care professionals need to be aware of the reproductive health care issues facing women with disabilities and take every opportunity to address them.
Sexuality and reproductive health issues have received inadequate attention for women with disabilities. Many women with disabilities desire children and are capable of conceiving, but face considerable pressure not to reproduce. Although a growing number of women with disabilities are becoming pregnant, anecdotal evidence suggests that many of these women encounter negative attitudes towards their pregnancies and report difficulty receiving comprehensive prenatal care.
Thomas C. (2001, April/May). Medicine, gender, and disability: Disabled women’s health care encounters. Health Care for Women International, 22(3), 245-262.
In this article I examine the intersection of gender and disability in the medical arena by considering disabled women’s experiences of receiving health care in the United Kingdom. Drawing on the “social model of disability,” I focus on the attitudes and practices of doctors. I use two sources of qualitative data: (i) 68 disabled women’s narratives gathered in the United Kingdom in 1996-1997; (ii) interviews with 17 disabled women regarding their reproductive experiences in the United Kingdom. I suggest that disabled women health service users are at risk of experiencing oppressive medical practices because two forces of oppression appear to be frequently, and interactively, in play: patriarchy and disablism.
Tighe, C. A. (2001, June). ‘Working at disability’: A qualitative study of the meaning of health and disability for women with physical impairments. Disability & Society, 16(4), 511-529.
Seven women with cerebral palsy and one woman with a spinal cord injury were interviewed about the meaning of health and disability in their lives. The most compelling feature of their narratives was the pressure to define their health by able-bodied standards. These women ‘worked at’ fitting their bodies and experiences into the limited societal understanding of a body. Paradoxically, the women seemed to come to a deeper personal understanding of disability and themselves through this work. The women’s stories of health, impairment and disability, as told in the interviews, blended into rich chapters of their life stories.
Tilley, C. M. (1998). Health care for women with physical disabilities: Literature review and theory. Sexuality and Disability, 16(2), 87-102.
Article reviewing the literature on women with disabilities, including both scholarly literature and literature written by women with disabilities themselves. Topics covered include: women with disabilities in relation to the disability field and the mainstream feminist movement; the status of women with disabilities; health issues; reproductive health services; and sexuality and sexual abuse.
Tilley C. M. (2000). The contributions of the Australian government in meeting the health needs of Queensland women with physical disabilities. Sexuality and Disability, 18(1), 61-71.
This article overviews the Australian federal and state government disability strategies, as well as the Women’s Health Centres’ contributions, in meeting the health needs of Queensland women with physical disabilities. It also explores one of the least considered intersections of multiple identity discourses—feminism and disability studies and argues that access to health and related services is an equity issue that must be addressed in particular ways for women with physical disabilities. In fact, it elaborates how our women’s health services still largely continue to see the needs of women with disabilities as too narrow for their attention and our disability services continue to see their clients as ungendered and untouched by sociopolitical constructions of gender.
Turk, M. A., Gremski, C. A., Rosenbaum, P. F., & Weber, R. J. (1997). The health status of women with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 78(12), Supp5, S10-S17.
Article about a study of statistical associations between health status variables of women with cerebral palsy. Study participants were 63 women age 20-74 residing in the community, who completed three instruments measuring health status. It was found that most participants perceived themselves as healthy, and the observed health status measures (self-reported health, associated conditions, secondary conditions, and selected health behaviors) support this concept. For the most part, independent relationships were found between these measures, indicating no significant association among the variables. Where associations were found, such as between walking and participation in physical activity, the authors recommend further investigation to determine the implications for health promotion activities for women with CP.
Turk, M. A., Rosenbaum, P., & Scandale, J. (2001, March 31). Project W.E.A.L.T.H. Women Empowered, Aware and Learning Through Health Education: A health promotion project for women with disability in the domain of mobility – Final report. Syracuse, NY: Upstate Medical University, Department of Physical Medicine & Rehabilitation.
Through resources from the Office of Disability and Health at the Centers for Disease Control and Prevention, Project W.E.A.L.T.H. sought to uncover the issues relevant to the lives of women who have disabilities in the area of mobility. The five-year study blended a supported health behavior change plan with the traditional public health intervention strategy of an educational program.
Ubido, J., Huntington, J., & Warburton, D. (2002). Inequalities in access to healthcare faced by women who are deaf. Health and Social Care in the Community, 10(4), 247-253.
The Cheshire Deaf Women’s Health Project undertook a research study to assess the access to healthcare of women who are deaf in Cheshire, UK. Group discussions took place with 13 women who were hard of hearing and 14 women who were Deaf Sign Language users. Questionnaires were distributed to a stratified random sample of 103 women taken from the social services register, 38 of which were returned. In order to reach more women whose first language was British Sign Language, 129 questionnaires were distributed to the leaders of various clubs and organizations for people who are deaf, and 100 of these were returned. The data revealed inequities in access to healthcare. For example, women who are deaf face a lack of awareness by health staff of how to communicate with them. The survey confirmed that these problems are of major importance to the majority of women who are deaf. For example, fewer than one in 10 deaf women said that they usually fully understand what the doctor says to them when they visit the doctor on their own. There are many other difficulties faced by women who are deaf, leading to inequalities when they are compared with hearing people. Almost half the respondents said that they would be more likely to use health services if help and/or services for deaf women were available. The introduction of various relatively simple measures would greatly help to reduce the inequalities of access to healthcare faced by deaf women. Under the terms of the Disability Discrimination Act 1995, such action is essential if providers are to avoid facing possible legal action.
U.S. Department of Health and Human Services, Health Resources and Services Administration. (2006). Women’s health USA 2006. Rockville, MD: Author. Retrieved August 8, 2007 from http://www.mchb.hrsa.gov/whusa_06/pdf/w06.pdf.
Women’s Health USA 2006, the fifth edition of the data book, presents a profile of women’s health at the national level from a variety of data sources. The data book, developed by the Health Resources and Services Administration’s Office of Women’s Health, includes information and data on population characteristics, health status, and health services utilization. New topics in the 2006 edition include life expectancy, postpartum depression, food security, and smoking during pregnancy. Racial and ethnic disparities and gender differences in women’s health are also highlighted. The data book is intended to be a concise reference for policymakers and program managers at the federal, state, and local levels to identify and clarify issues affecting the health of women. For information on indicators in previous editions that are not included in this year’s edition, refer to Women’s Health USA at http://www.hrsa.gov/womenshealth or http://mchb.hrsa.gov/data.
Vyavaharkar, M. V., Moneyham, L. & Corwin, S. (2008). Health care utilization: The experiences of rural HIV-positive African American women. Journal of Health Care for the Poor and Underserved, 19(1), 294-306.
This qualitative study explored perceptions and experiences of HIV-positive rural African American women regarding availability, accessibility, and quality of health care and social services. Twenty-two women residing in rural areas of South Carolina were recruited to participate in one of three focus groups. A conceptual model of health services utilization was used to guide the study and served as a framework for coding data. Verbatim transcripts of group discussions were analyzed using content analysis to code and identify data categories. Data revealed common perceptions of lack of services and inferior quality of available services to meet some of their most important needs. Overall, findings provide a picture of women whom the health care/social services system fails to serve. The findings have significant implications for increasing resources and designing interventions that empower these women and enhance their quality of life.
Walsh, P. N., & Heller, T. (Eds.). (2002). Health of women with intellectual disabilities [Int. Assoc. for the Scientific Study of Intellectual Disabilities Series]. Malden, MA: Blackwell Publishing Inc.
The first interdisciplinary book taking a contextual approach to the developing health needs of women with intellectual disabilities. It considers the social, economic and political contexts of health promotion. Its concise but comprehensive evidence base makes it a unique, reliable source for a wide readership.
Walsh, P. N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H. & Working Group. (2000, January). Healthy aging – Adults with intellectual disabilities #2: Women’s health and related issues: A report of the Aging Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. Geneva, Switzerland: World Health Organization. Retrieved March 18, 2005 from http://www.uic.edu/orgs/rrtcamr/womenshealthreport.html
“This report is concerned with issues which are important for the health of women with intellectual and developmental disabilities as they grow older and age. The specific focus on women’s health is in no manner meant to be dismissive or designed to minimize concerns related to men’s health issues. However, it is the position of the SIRG on aging that women’s health issues have not received appropriate and sufficient attention, that women as they age are subject to sex-related conditions and changes, and that in many instances the interests and needs of aging women and women with disabilities are overlooked or neglected. Thus, this report is designed to explore factors related to well-being and quality of life for women, to examine and define sex-linked differences in their life experiences and opportunities and to define their distinctive vulnerabilities–including research on health status and access to health care.”
Welner, S. (1999). A provider’s guide for the care of women with physical disabilities & chronic medical conditions. Chapel Hill, NC: North Carolina Office on Disability & Health, Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill. Retrieved April 1, 2005 from http://www.fpg.unc.edu/~ncodh/Provider.pdf
This guide, written by Dr. Sandra Welner, is designed for clinicians to improve their knowledge and practice in providing care to women with physical disabilities and chronic medical conditions. Includes information on access to general medical care, removing common barriers, and comprehensive reproductive health care. A plain text/HTML version of this booklet can be found at: http://www.fpg.unc.edu/~ncodh/Providerhtml.html
Welner, S. (Ed.). (1999). Women’s health and gynecological care [Special Issue]. Sexuality and Disability, 17(3).
This feature issue contains a range of articles concerning health, gynecologic care, sexuality and abuse of women with disabilities.
Welner, S. L., & Haseltine, F. (2003, November). Welner’s guide to the care of women with disabilities. Philadelphia: Lippincott, Williams and Wilkins.
“This volume provides much-needed guidance on the gynecologic and obstetric care of women with chronic diseases, injuries, and disabilities. The authors offer practical advice on reproductive, sexual, and psychosocial problems that result from many disabilities and aspects of routine gynecologic care that are complicated by many injuries and chronic diseases. Topics covered include conducting the pelvic exam, treating menstrual disorders, choosing contraception, managing the pregnant patient, anesthesia during labor and delivery, the infertility evaluation, and managing menopause and osteoporosis. The book includes templates for patient education handouts that the practitioner can copy and modify for specific patient needs.”
White, L. J., McCoy, S. C., Castellano, V., Ferguson, M. A., Hou, W., & Dressendorfe, R. H. (2006). Effect of resistance training on risk of coronary artery disease in women with multiple sclerosis. Scandinavian Journal of Clinical & Laboratory Investigation, 66(4), 351-355.
Physical activity is often recommended to healthy populations to reduce Coronary Artery Disease (CAD). This study tested the hypothesis that a short-term resistance training program would be associated with a reduction in CAD risk factors in women with MS.
CAD risk factors were assessed both before and after the program. Static strength of knee extensors and ankle flexors increased significantly, while self-reported fatigue decreased after training. The number of elevated CAD risk factors for each subject was also significantly lower after training. These findings suggest that short-term resistance training may be able to reduce CAD risk factors in ambulatory females with MS.
Whitehead, K., & Williams, J. (2001, January). Medical treatment of women with lupus: The case for sharing knowledge and decision-making. Disability & Society, 16(1), 103-121.
Few women patients in this study were found to be active partners in the medical management of systemic lupus erythematosus (SLE). Despite the growing emphasis on doctors and patients sharing knowledge and decision-making power, most of the women were struggling to have their symptoms and needs taken seriously, and appeared relatively powerless in relation to the medical profession. Acknowledging patient expertise requires that doctors share some of their power, and we suggest this may be especially problematic when medical resources and power are primarily located in the hands of white men, and when the patients are typically women and often from the black community. Implications for action that are considered include maximizing the influence of women with SLE on research, training and practice.
Wilkinson, J. E., & Cerreto, M. C. (2008). Primary care for women with intellectual disabilities. The Journal of the American Board of Family Medicine, 21(3), 215-222.
Women with intellectual disabilities (ID) need thoughtful, well-coordinated care from primary care physicians. They are particularly susceptible to experiencing disparities in care because of varied participation in shared decision making. This review of the current literature comments on the quantity and quality of existing studies regarding several key women’s health issues: menstrual disorders, cervical and breast cancer screening, contraception, and osteoporosis. A review of the current thinking regarding ethical and legal issues in medical decision making for these women is also provided. We found that there are several high-quality studies recommending early and frequent screening for osteoporosis, which is more common in women with ID. Smaller and fewer studies comment specifically on techniques for accomplishing the gynecological examination in women with ID, although the cervical cancer screening recommendation should be individualized for these patients. Consensus data on the management of menstrual problems and contraception in women with ID is provided. There are some data on breast cancer incidence but few articles on methods to improve screening rates in women with ID.
A woman’s guide to coping with disability (4th ed.). (2003). Winchester, MA: Resources for Rehabilitation.
This book addresses the special needs of women with disabilities and chronic conditions, such as social relationships, sexual functioning, pregnancy, child rearing, caregiving, and employment. Special attention is paid to ways in which women can advocate for their rights with the health care and rehabilitation systems.
Written for women in all age categories, the book has chapters on the disabilities that are most prevalent in women or likely to affect the roles and physical functions unique to women. Included are arthritis, diabetes, epilepsy, lupus, multiple sclerosis, osteoporosis, and spinal cord injury. Each chapter also includes information about the condition, service providers, and psychological aspects plus descriptions of organizations, publications and tapes, and special assistive devices. This new edition includes e-mail addresses and Internet resources.
Women with disabilities health and wellness fact sheet for health care providers. (2003, May). Santa Fe, NM: New Mexico Department of Health. Retrieved March 1, 2005 from http://www.health.state.nm.us/dhp/WWD%20fact%20sheet.pdf
Provides brief facts and statistics for health care providers concerning women with disabilities. Includes national and New Mexico resources. Other fact sheets available include A Provider’s Guide for the Care of Women with Physical Disabilities & Chronic Medical Conditions, Breast Health Access for Women with Disabilities, and National Study of Women with Physical Disabilities (see http://www.health.state.nm.us/whm.html).
Wong, A. (2000). The work of disabled women seeking reproductive health care. In R. Shuttleworth, L. Mona, & D. Kasnitz (Eds.), Disability, sexuality, and culture: Societal and experiential perspectives on multiple identities, Part II [Special Issue]. Sexuality and Disability, 18(4), 301-306.
Traditionally, the needs of disabled people have been under the specialty known as physical medicine and rehabilitation. The compartmentalization of disabled people to this specialty rather than primary care is topic of a criticism by disability activists who claim this as evidence that doctors avoid those whom they cannot cure and reject disability as everyday part of life (Gill et al. 1994). Attention to disabled women’s health has been gradually expanding and improving. However, the split between physical medicine and rehabilitation and general primary care has created some gaps for women with disabilities, perhaps most especially regarding obstretic and reproductive health care. This is a study that examines the reproductive health care experiences of disabled women living in the San Francisco Bay Area. These experiences cover areas of sexuality, pregnancy, contraception, pelvic exams, and medical technology (e.g., mammography). The aim of the study is to gather information on this population’s experiences with health care professionals, specifically professionals who provide care regarding reproductive and sexual health. How do disabled women navigate through the health care system as they search for care that “fits”?
Zoller, H. (2005, June). Women caught in the multi-causal web: A gendered analysis of Healthy People 2010. Communication Studies, 56(2), 175-192.
This essay is a gendered analysis of the U.S. Department of Health and Human Service’s Healthy People 2010 initiative (HP 2010). HP 2010 sets national health goals and priorities for public health agencies throughout the nation with a stated goal to “reduce health disparities” (p. 2), including disparities based on “gender, race, education or income, disability, geographic location, or sexual orientation” (p. 11). Given the focus on women’s medical research since the 1990s and the continued presence of gendered health disparities, it is important to investigate how public health policy defines, depicts, and prioritizes issues related to women’s health, particularly poor and minority women. A close reading of three sets of chapters related to physical disease, health care services, and sexual health issues from the perspective of women suggests that despite renewed promises, the “multi-causal web” approach to public health does not promote conditions that would empower marginalized groups because it fails to address sex differences in health advice and prioritize economic and political changes necessary for marginalized groups. Underlying these issues is a lack of consideration for the role of socially constructed gender roles along with race and class in health status and inequities.