Research & Evaluation

The research on gynecologic and breast health suggests that women with disabilities, particularly those with more severe functional impairments – do not have the same level of access to care as the non-disabled women. This is despite the fact that women with disabilities are equally at risk – if not more so – for breast and cervical cancers as non-disabled women.

The reasons for the increased risk include:

more frequent X-rays
differences in exercise and nutrition
prolonged use of certain medications
late childbearing or nulliparity

These lifestyle differences create a sense of urgency for care providers to ensure universal access to mammography and cervical cancer screening.

Accessibility is an Issue

In our research study, we found that a high number of respondents thought it was important for women with disabilities to have regular pelvic and breast exams along with mammography: however, a significantly lower number had not had these cancer screening tests compared to the rate for their non-disabled counterparts. Several issues contributed to this low participation rate, such as the lack of an accessible examination table in physicians’ offices for pelvic and clinical breast exams and the inability of current breast screening technology to accommodate women in wheelchairs.

There is also a documented high rate of physical and sexual abuse among women who are disabled. And, the more disabling the condition, the more likely a woman is to be assaulted. Much of this abuse is at the hands of family members or caregivers (who include physicians, nurses, therapists and personal care attendants). Therefore, underlying the discussion of access is the need for a safe environment.

A range of disabilities was reported by women in our study, pointing to the need for a range of services. As one respondent commented, “Some people can get by with considerably less, some people need [more]. We have to be able to service the whole community.” To accomplish this, the physical space offered must be big enough to accommodate a person in a wheelchair and her companion, if she chooses to bring someone along for assistance, as well as the physician.

Physicians Play a Crucial Role

Psycho-social challenges to accessing care include a lack of awareness on the part of women that screening exams were important, respondents’ physicians telling them it was not necessary, and respondents’ own assumptions that such exams were impossible due to their disability.
These challenges were not limited to conceptual challenges but included finding physicians who were sensitive, patient and informed about a particular disability or disabilities in general. Most of the women in the focus group reported having positive relationships with physicians, but they stipulated this was only after they had made a concerted effort to find a sensitive physician. For women in this study, the consequences of not finding practitioners sensitive to the nuances and implications of women’s disabilities included non-treatment.

Advocacy Is Important

Is with their non-disabled counterparts, a woman with a disability’s gynecological and breast health care occurs within the context of her life. For women in this study, this context included physical or mental disabilities that often took precedence over less urgent, preventative health care needs. The women in our study described the importance of self-advocacy, at the same time recognizing that some women with disabilities may not have the resources or awareness to advocate for themselves. One participant in the focus group said, “I think the onus is on individuals to educate themselves, to seek help.”

The notion of advocacy also extended to educating others about disabilities. One focus group participant noted, “It’s up to people [with disabilities] ... to educate the people around them…. Most people, if they are not in a wheelchair and have not been around people in wheelchairs, just do not think about it.” The need for self responsibility that underlies many of the comments in our focus group, points to the need for a mechanism to facilitate self-responsibility.

This raises the issue of the accessibility of information. The lack of alternative formats to convey information was noted as a limitation, excluding women who are blind, deaf or dealing with learning disabilities. Several participants suggested the development of informational pamphlets targeted at specific populations.

Clearly, the presence of a disability (or disabilities) does not negate the need for gynecologic and breast health care. Programs and materials are needed that inform women about how disability can affect their reproductive and breast health, and how women can work with health care providers to ensure that they are receiving the same quality of service as women who do not have disabilities.

In 2002, BC Women’s established the Access Clinic, a gynecological service for women with disabilities. For more information, call 604-875-3060.

Lenore Riddell, RN, MSN, is a Clinical Nurse Specialist with BC Women’s Hospital.
Dr. Kathy Greenberg provides medical care for pregnant women at BC Women’s Hospital.
Joan Meister, BA, was the Chair of the Board for the BC Centre of Excellence for Women’s Health. She passed away in January of 2005.
Jude Kornelsen, PhD, is a researcher with the Centre of Excellence for Women’s Health.

Adapted from “We’re women, too: Identifying barriers to gynecologic and breast health care for women with disabilities.” British Columbia Centre of Excellence for Women’s Health. Vancouver, B.C. The full research study available at http:www.bccewh.bc.ca