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HEALTH CARE AND WELLNESS

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.

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  

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.”

Blanchard, J., & Hosek, S. D. (2003). White paper: Financing health care for women with disabilities. Pittsburgh: RAND. Retrieved March 1, 2005 from http://www.rand.org/publications/WP/WP139/WP139.pdf  

Women with disabilities, a large and growing segment of the U.S. population, are underserved when it comes to health care services 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 health care for women with disabilities and presents recommended strategies to address those issues.

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/  

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 “

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.

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.

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/LegalRegulationandConstruction.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.

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.

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.

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.

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.”

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, Australia: 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  

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.

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.

McCarthy, M. (2002, December 1). Going through the menopause: Perceptions and experiences of women with intellectually 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.

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.

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.

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&section=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.

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.

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.

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  

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.

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.

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.”

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.

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.

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.

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."

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.

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.