Breast Health for Women with Disabilities

Breast Health for Women with Disabilities Bibliography

The following list of resources has been compiled to assist health care providers, women with disabilities, families, personal care assistants, and other related professionals in quickly finding information on breast health for women with disabilities.

Breast health education must involve both the health provider and the patient. Additionally, for women with developmental disabilities, adequate breast health care may involve other individuals such as personal care assistants and other health professionals. Because of this, users of this bibliography will find a diverse mix of materials. The bibliography contains articles from peer reviewed journals, reports, guides, training manuals, videos, kits, and educational materials specifically designed for women with developmental disabilities. However, to make it easier to find resources, the list of materials is separated into two sections:

• Research Articles, Reports, and Books
• Program Development, Training, and Support Materials

Research Articles, Reports, and Books

Caban, Mabel E., et al. “Breast Carcinoma Treatment Received by Women with Disabilities Compared with Women without Disabilities.” American Cancer Society 94 (2002): 1391-1396.

The study explored the different breast cancer treatment options experienced by women with disabilities verses those without. The study, which reviewed the charts of 39 women with disabilities, found that women with disabilities received breast-conservation surgery 38% of the time verses 49% of the time for women without disabilities. Additionally, women with disabilities received neoadjuvant chemotherapy 13% of the time verses 29% of the time for women without disabilities. The authors noted that women with disabilities were less likely to receive these two treatments, they did not feel that the findings reached statistical significance and determined that the results of the study did not support the hypothesis that women with disabilities were diagnosed at a more advanced stage of breast cancer.

Cowie, Marie and Fletcher, John. “Breast Awareness Project for Women with a Learning Disability.” British Journal of Nursing 7 (1998): 774-778.

A pilot project was developed in Britain to raise awareness of breast health issues among women with cognitive impairments and their care providers. Ethical issues addressed by the program includede determining who should conduct a breast exam, acquiring consent, and the risk of abuse. Additionally, the program developed a breast awareness policy that encourages early detection, provides opportunities for learning about breast care, and raises the awareness of these issues among care providers. At the completion of the pilot program, policies and procedures developed were reviewed and revised to address the need for more flexibility in how breast awareness services were provided.

Davies, N. and Duff, M. “Breast Cancer Screening for Older Women With Intellectual Disabilities Living in Community Group Homes.” Journal of Intellectual Disability Research 45 (2001): 253-257.

With the increased lifespan of women with cognitive impairments, the risk of breast cancer is becoming a reality for this group. This study explored whether or not British women with cognitive impairments over the age of 49 living in within communities with breast screening programs were aware of and practiced breast self exams. Only a third of the survey respondents conducted regular self exams. The study also noted that primary health care providers played a minor role in educating and promoting breast awareness in the lives of the women. The article suggests that opportunities exist for health care providers to promote both breast health education and general health care.

Drum, Charles E., Pobutsky, Ann and Goff, Traci. “Cancer Screening Patterns Among Women with and without Disabilities in Oregon.” Data and Policy Brief. (2000): Oregon Office on Disability and Health. 9 May, 2004 http://cdrc.ohsu.edu/oodh/publications/briefs/PolicyResearchBrief_000.htm

The study compares cancer screening data from the 1998 Behavioral Risk Factor Surveillance System (BRFSS) for women with and without disabilities specifically in the state of Oregon. BRFSS is an annual telephone survey of non-institutionalized adults conducted in each state. A module of this survey includes questions which help identify disability status. The study showed that women with and without disabilities received cancer screening at approximately the same rates. Additionally, Oregon women with all types of disabilities received initial screening and mammograms at a great percentage than women without disabilities. However, results indicated that although women with disabilities were receiving initial screening services, they experienced longer periods of time since being screened and appear to not receive adequate follow-up services.

Gillings-Taylor, Samantha. “Why the difference?: advice on breast examination given to carers of women who have learning disability and women who do not.” Journal of Learning Disabilities 8 (2004): 175-189.

The article examines if health care providers are being discouraged from performing regular breast examinations for women with cognitive impairments. It examines how the “Cancer Screening Programme” guidelines developed Great Britain impact choices made, and explores concerns about consent and potential for abuse. The author concludes with the recommendation that women with cognitive impairments should have the opportunity for breast examinations and offers recommendations to address issues of abuse, consent, and who should perform exams. (Taken from abstract.)

Health of Women with Intellectual Disabilities. Ed. Patricia Noonan Walsh and Tamar Heller, Malden: Blackwell Publishing, 2002.

This text is part of a series designed to address the issues of adult development, health, and aging among persons with intellectual disabilities. This compilation uses a multiple disciplinary perspective to explore the context of health status and trends, best practices and public policy. Screening programs for breast and cervical cancer are noted as priority targets to be included in routine health care services for women with disabilities.

Iezzoni, Lisa I., et al. “Use of Screening and Preventive Services Among Women with Disabilities” American Journal of Medical Quality 16 (2001): 135-142.

The authors examine the use of screening and preventative services among women with disabilities. Using data from the 1994-1995 National Health Interview Survey, the study examined health services received by women with disabilities. Disabilities were broken down into six categories: vision impairments, hearing impairments, lower extremity mobility disabilities, upper extremity mobility impairments, difficulty using hands, and serious mental health problems. A variety of health indicators were identified including receiving breast exams and mammograms. The study showed discrepancies between women with and without disabilities, but noted that it was difficult to determine precisely the rates of health screening between these groups. Additionally, the authors acknowledged that the study did not include women with cognitive impairments. Discussion is included examining barrier to care and provide suggestions for improving access.

NHS Cancer Screening Programmes. Good Practice in Breast and Cervical Screening for Women with Learning Disabilities. London: NHSCSP Publications, 2000.

Created in Great Britain, the handbook provides information on good practices when providing breast and cervical screening services to women with cognitive impairments. Emphasis is placed on the right to access quality health care, as well as on effectively informing a woman with a cognitive impairment of the services available to them and accurately explaining the procedures being performed. The guide includes criteria for assessing the capacity of individuals to consent to screening as well as recommendations to take if a woman is not able to consent.

Nosek, M. A. and Gill, C. J. “Use of Cervical and Breast Cancer Screening Among Women With and Without Functional Limitations – United States, 1994-1995” MMWR: Morbidity & Mortality Weekly Report 47 (1998): 853-856.

The report reviews data from the National Health Interview Survey which indicated that women with functional limitations are less likely to have had breast and cervical screening tests than women without such limitations. The overall inaccessibility of mobile mammography trailers for women with physical impairments was specifically noted as a barrier to receiving services for many women. Several limitations of the report are identified and the need for additional research to further explore barriers to preventative services is recommended.

Nosek, Margaret A. and Howland, Carol A. “Breast and Cervical Cancer Screening Among Women with Physical Disabilities” Archives of Physical Medicine and Rehabilitation 78 (1997): S39-44.

Reporting information from the National Study of Women with Physical Disabilities, the article provides information about the screening rates for breast and cervical cancer among women with physical disabilities. The report also examines factors associated with receiving regular screenings. The article reported that women with disabilities were found to be less likely than those without disabilities to receive screening tests for breast and cervical cancer. Additionally, women with disabilities are found to be at a higher risk for delayed diagnosis of these cancers due to reasons of environmental, attitudinal and information barriers. It was concluded that further research is warranted to increase information about cancer prevention among women with disabilities.

Owen, Cathy, Deslee, Jessie, and De Vries Robbe, Mirijana “Barriers to Cancer Screening Amongst Women with Mental Health Problems” Health Care for Women International 23 (2002): 561-566.

The authors compared breast examination and cervical cancer screening services utilized by a group of women with mental health problems versus women in the general population in the same Australian state. The study reported similar utilization rates of the services between the two groups. However the authors noted some limitations of the study including that the data used was entirely self report and could not be corroborated by other records and as a result the findings deserve further examination.

Parrish, Alan and Markwick, Anne. “Equity and Access to Health Care for Women with Learning Disabilities” British Journal of Nursing 7 (1998): 92-96.

This article examines the healthcare needs of women with cognitive impairments in the United Kingdom. It was noted that breast examinations to detect cancer at an early stage are rarely done. Contributing factors to the lack of detection may include the inability of a woman with a cognitive impairment to do their own exam, the invasive nature of having a monthly exam conducted by another person, and the lack of necessary skills among health professionals to perform a thorough breast exam Suggestions are made for increasing the number of examinations performed. In addition, it is noted that well women clinics are being organized and set up in areas such as Southport and Stafford.

Riddell, Lenore, et al. We’re Women, Too: Identifying Barriers to Gynecologic and Breast Health Care for Women With Disabilities. Vancouver: British Columbia Centre of Excellence for Women’s Health, 2003.

This study was designed to examine three questions, 1. To what extent do women with disabilities regularly receive screening for breast and cervical cancer? 2. What are the barriers that prevent women with disabilities from receiving this care? 3. How can providers use this information to improve screening services? Focusing on all types of disabilities, information was gathered through surveys and focus groups. The results of the study found that women with disabilities received regular breast cancer screening services at a lower rate than women without disabilities. Additionally, women with multiple disabilities or women with cognitive disabilities were even less likely to receive these services. Additionally the study identified several barriers to accessing services including psycho-social barriers.

Roetzheim, Richard G. and Chirikos, Thomas N. “Breast Cancer Detection and Outcomes in a Disability Beneficiary Population.” Journal of Health Care for the Poor and Underserved 13 (2002): 461-476.

This study examined existing data from the 1991-1993 Medicare-Surveillance Epidemiology and End Results, researchers compared whether or not women who qualified for Social Security Disability Insurance (SSDI) were diagnosed with breast cancer at a different stage than women who did not qualify for SSDI. The researchers found that patients with disabilities tended to be diagnosed with breast cancer at later stages and had higher mortality rates than patients without disabilities. However, authors noted that these findings were primarily limited to patients who were enrolled in Medicare FFS insurance. Patients with disabilities who were enrolled in a Medicare HMO did not show this discrepancy and were diagnosed at a similar stage as patients without disabilities. Limited information available to researchers prevented them from exploring further why there was this difference and if there were confounding factors such as enrollment preferences.

Schootman, Mario and Jeffe, Donna B. “Identifying Factors Associated With Disability-Related Differences in Breast Cancer Screening (United States).” Cancer Causes and Control 14 (2003): 97-103.

This study was a part of the 1996 Medical Expenditure Panel Survey (MEPS), which examined medical care use and expenditures in the United States. The study found that women with disabilities were less likely to be screened for breast cancer. This discrepancy between women with and without disabilities remained in each of the three age group examined (40 – 49, 50 – 69, and 70 and older.) The study did not explore in depth the reasons for this discrepancy, but noted that further research would be valuable for women with disabilities age 50 – 69 where screening is associated with a reduced risk of breast cancer mortality.

Thierry, Joann M. “Observations from the CDC: Increasing Breast and Cervical Cancer Screening Among Women with Disabilities” Journal of Women’s Health and Gender-Based Medicine 9 (2000): 9-12.

The article provides a general overview of the prevalence of breast and cervical cancer screening among women with disabilities, as well as describes common barriers to health care faced by these women. It also gives brief descriptions of a few resources that can be used to help address these issues. The article concludes with a recommendation for more research into how environmental and attitudinal barriers impact health screening among this group.

Schopp, L.H., et al. “Impact of Comprehensive Gynecological Services on Health Maintenance Behaviors Among Women with Spinal Cord Injury.” Disability and Rehabilitation 24 (2002): 899-903.

The article examines the ability of a women’s health clinic established to meet the needs of women with spinal cord injuries and other disabilities to impact the rates of preventive gynecologic health care behaviors in these patients. The study noted an increased willingness to perform monthly breast exams and to receive mammograms among patients. The health care model examined shows promise as a way to increase certain positive health behaviors among women with disabilities.

Sullivan, S.G., et al. “Breast Cancer and the Uptake of Mammography Screening Services By Women with Intellectual Disabilities.” Preventative Medicine 37 (2003): 507-512.

The study explores the differences in rates of breast cancer screening and breast self exams between women with disabilities and those without. Traditionally women with intellectual disabilities have had a lower life expectancy than the general population. However recent research has shown a marked increase in the lifespan of people with cognitive disabilities. Because of this change, women with cognitive disabilities are expected to be at risk for breast cancer. The study showed a reduced overall rate of breast cancer among women with disabilities, however the researchers acknowledged that this may be because the majority of study participants were under the age of 50. Results also showed that there was a significant difference in the amount of women with intellectual disabilities who received mammograms (34.5%) verses women without disabilities (54.6%), and that women living in institutional settings utilized screening services at a lower rate. The authors suggested that the more severe of a disability a woman had, such as cognitive and physical disabilities, typically tended to reduce the likelihood of receiving a mammogram thus offering a possible explanation for these discrepancies.

Welner, Sandra L. “Screening Issues in Gynecologic Malignancies for Women with Disabilities: Critical Considerations” Journal of Women’s Health 7 (1998): 281-285.

This editorial describes some important issues regarding the screening for gynecologic malignancies including breast cancer in women with disabilities. Although breast cancer is the most prevalent gynecological cancer in women, specific aspects of the condition experienced by women with disabilities may greatly hinder the ability of health professions to detect the disease. Additionally, many women with disabilities have not been adequately trained to perform self exams or may not be aware the adaptive techniques that can be used to perform services such as clinical exams and mammography. Because of this, breast cancer may not be diagnosed until it has progressed to an advanced and potentially fatal stage. The author concludes by noting that improvements in both physical accessibility and improving health education services to women with disabilities could increase the early detection rates for women with disabilities.

Welner, Sandra L., et al. “Practical Considerations in the Performance of Physical Examinations on Women with Disabilities” Obstetrical and Gynecological Survey 54 (1999): 457-462.

Over 28 million women in the United States have a disability to some degree. The authors explore the reasons why many in this group do not get regular physical exams which help to ensure good health and prevent common diseases. Issues unique to performing exams on women with disabilities are included. The article discusses abdominal, pelvic, and breast exams and reviews basic strategies to overcoming barriers to performing these exams. The article also discusses the risk women with disabilities face for sexually transmitted diseases and abuse.

Welner, Sandra L. and Haseltine, Florence. Welner’s Guide to the Care of Women with Disabilities. Philadelphia, Lippincott, Williams & Wilkins, 2003.

This comprehensive guide provides a concise overview of the physical and mental health issues specifically for women with disabilities. The authors place these issues in the context of the whole woman and recognizes that women with disabilities need the same services as their peers without disabilities. A basic premise of the guide is that no assumptions about a woman’s health needs should be based on the nature and extent of her disability. The primarily focus of the authors is the management of medical problems that warrant special consideration in women with disabilities. The book contains specific information relating to breast cancer, breast examination and mammography for women with disabilities.

Program Development, Training, and Support Materials

The Adaptive MammaCare Personal Learning System. Kit. Gainsville: MammaCare, 2003.

The MammaCare kit is designed to teach women who are blind or have a visual impairment to perform a breast self exam. The kit contains a tactual breast form to teach women to detect breast lumps, instructions in both audiocassette and descriptive video, large print booklet, and Braille instructions.

Arbuckle, Kristen, et al. Women First: Breast Health for Women with Developmental Disabilities. Laramie: Wyoming Institute for Disabilities, 2004.

The guide was developed to help women with developmental disabilities learn basic breast health information. Written in an easy to read format, the images and text introduce the concepts of taking care of yourself, breast health, monthly self exams, and annual visits to a health care provider. The guide also includes a yearly calendar that women can use to record their monthly breast self exams and annual visit to their health care provider, and a checklist of tips for health care providers that can be used to make their services more accessible.

BHAWD: Breast Health Access for Women with Disabilities. 2004. Alta Bates Summit Medical Center. 15 March, 2004 http://www.bhawd.org/.

The BHAWD program is one of the very few projects in the nation focused on providing accessible breast health services to women with disabilities. The project’s web site provides access to a variety of articles and resources focusing on this topic and can be used as a general starting place for individuals wanting to learn more about accessible breast care.

Breast Health and Beyond for Women with Disabilities: A Providers Guide to the Examination and Screening of Women with Disabilities. Ed. Florita Maiki, Nancy Freed, Jodi Pullan, and Janice Tizon. San Francisco: Breast Health Access for Women with Disabilities (BHAWD), 2004.

Created by the Breast Health Access for Women with Disabilities (BHAWD) program, the manual is designed to increase knowledge and awareness among health care professionals in providing breast health clinical screening services to women with disabilities. It will assist health care providers in modifying their services and screening protocols to accommodate patients with disabilities. The manual also examines specific limitations including visual, hearing, and cognitive disabilities. Suggestions are provided on how to teach and perform a modified breast self exam.

Donaghey, Veronica, et al. Getting on with Cancer. London: Gaskell and St George’s Hospital Medical School, 2002.

The book is designed to assist women with cognitive impairments understand what happens when they get cancer. The pictures book shows drawings of a women becoming sick and receiving treatment for cancer. Health care providers can use it to introduce concepts and start discussing difficult feelings that may come up after a diagnosis of cancer. The book was created in Great Britain and uses terms and descriptions specific to that country.

Hollins, Sheila and Perez, Wendy. Looking After My Breasts. London: Royal College of Psychiatrists, 2000.

The picture book is designed to introduce women with cognitive impairments to breast health concepts and activities such as a breast examination by a health care provider, being called by to the doctor’s for more tests, and general breast awareness. A storyline and other support information are provided at the end of the book to assist care providers using the resource. Created in Great Britain, the book uses terms and descriptions of specific to that country.

Mairs, Beth. “Breast Self-Examination: A Handbook for Women with Disabilities.” DAWN Ontario. 24 Sept. 2003 http://dawn.thot.net/BSE_Handbook.html

The online handbook provides a general overview of breast health issues including breast self exams, mammography, and reasons to take care of your breast. The document contains limited information about providing alternative services to women with disabilities. A text-only version of the handbook is also available through this web page.

My Body, My Responsibility: A Health Education Video for Deaf Women. Dir. Wayne Betts. University of Rochester, 2003.

The video serves to educate young deaf women on important health care issues. It portrays two young women, one with concerns about puberty, and the other who makes her first visit to a gynecologist. Detailed information is provided on how to conduct a breast self exam. Additionally, the video models using a sign language interpreter in a health care setting.

Our Own Best Advocates: Breast Health for Women with Disabilities. Videocassette. Video/Action Productions, 1999.

The video presents four women with disabilities learning breast self-examination routines. Techniques are adapted to meet the needs of each individual and demonstrations are given showing a partner or care provider conducting the examination. The video is also available in Spanish.

The Pathways Series: Breast Care: Strategies for Making Preventive Breast Care Accessible for Women with Disabilities. CD-ROM. Pamona: Center for Disability Issues and the Health Professions, 2002.

The self-learning module is intended to provide physicians, nurse practitioners, and physician assistants with the skills and abilities they need to successfully adapt the Clinical Breast Exam (CBE), the Breast Self-Exam (BSE) and Mammography for women with physical, sensory and mild cognitive disabilities. The CD also includes printable protocols that can be reused.

Shabas, Debra. “Knowledge Is Empowerment: Breast Cancer Prevention for Women with Disabilities.” WE Magazine 3 (1999): 44.

The article explores the basic issues related to breast cancer prevention for women with disabilities. Issues covered include barriers to breast self-examination and mammography. Additionally the author provides a basic review of risk factors, steps for a breast self-exam, and a short list of breast health resources.

Taylor, Maria Olivia. The Gyn Exam Handbook: An Illustrated Guide to the Gynecologic Examination for Women with Special Needs. Santa Barbara: James Stanfield Company, 1991.

The guide and accompanying videos are designed to introduce women with cognitive impairments to a variety of procedures performed during a regular gynecological exam. It provides users with a detailed introduction to the breast exam, including steps for breast self exam, and educates women on the importance of regular gynecologic health care.