Breast Health Access for Women with Disabilities: Good Intervention or just Good Intention? - Kelsey L. Dicker

The Breast Health Access for Women with Disabilities (BHAWD) program is one of the only initiatives of its kind in the country. Based in California, BHAWD has an accessible clinic with specially trained providers for nearby residents to take advantage of mammography services as well as training in adaptive self-breast exam techniques (1). Within the realm of the biomedical model, BHAWD should be proud of the quality care the clinic provides to women with disabilities in the Bay Area. Unfortunately, the public health outreach of BHAWD falls short. The 2001 California Health Interview Survey found that women with disabilities were 13% less likely than women without disabilities to adhere to cancer screening guidelines for mammography (2). As a pioneer in this field, BHAWD has made a significant accomplishment by starting an initiative, but has otherwise missed the mark. My critique of BHAWD has three arguments: a) the program focuses on the individual rather than society; b) the program ignores the historical and cultural context of disability; and c) the program does not account for psychological factors.
Society’s impact.
BHAWD focuses its efforts on educating the individual in an effort to promote behavioral change. It does not address societal factors that are ultimately leading to the disproportionate rates of mammography in women with disabilities compared to women without disabilities. According to Ramirez et al (2), “…individual health behaviors may be secondary to structural (health insurance and access to care) and/or clinical factors (doctor’s recommendation) underpinning the differences observed in preventative cancer screening outcomes evaluated.”
Providers’ attitudes and beliefs may have a large influence on why mammography rates are lower in women with disabilities. Often they unwittingly subscribe to the myth that complete exams and screenings are not feasible due to the physical limitations of a woman with a disability. Furthermore, the same are likely to suffer from a lack of training in specific adaptive examination techniques and a lack of focus on disability in medical school (3). Some studies have even gone so far as to say that negative attitudes held by physicians about patients with disabilities may lead to providing substandard care, or worse, withholding care all together (4). A subject in a qualitative study in 2004 (5) recounted a related experience when her provider refused to address her fatigue because he believed it was actually just laziness.
According to Nosek et al (6), 25% of women with disabilities who have never received a mammogram reported their main reason for not adhering to guidelines was that no doctor had ever discussed or recommended mammography with them. In addition to the influence of provider’s personal beliefs on suggesting mammography, there may be other crucial factors beyond his/her control.
For instance, time constraints during visits is one reason noted by primary care physicians for not addressing preventative health behaviors, such as mammograms, with patients with disabilities (7,8). Time constraints are likely shaped by a number of reasons, the first being the primary care shortage across the country. This puts pressure on all providers to see more patients in the same amount of time, leading to an average time per patient 15.7 minutes (including documentation) (9). For patients with disabilities, this means their more complex health issues, including both chronic and acute problems, must be discussed in this smaller window of time (10). Addressing health problems, rather than preventing them, becomes the priority of the visit. Physicians also mentioned underinsurance or low reimbursement rates for preventative health measures as a reason for not engaging in or recommending prevention to patients with disabilities (7,8).
A 1999 article published by Chan et al (11) found that only 13.2% of female Medicare recipients with high levels of functional limitation (defined as 5-6 activities of daily living limitations) had received a mammogram. This percentage dropped to only 5.2% for women living in long-term care facilities. Importantly, this study adjusted for important patient characteristics, such as income, race, and education, and found that increased level of disability was independently linked to decreased rates in mammography. This may be attributed to issues addressed above, or more intangible problems, such as society’s perception of patients with disabilities.
Though it still is important for the individual to take initiative when it comes to personal health, there are obviously much larger forces at play that prohibit women with disabilities from receiving mammography services at the same rate as their peers without disabilities. Even if a woman has a mammogram scheduled, issues beyond her control, such as transportation (6,12) or inaccessible facilities (6,10,12), can prohibit her from receiving the desired care.
Historical & Cultural Context of Disability.
BHAWD ignores the historical and cultural context of disability. We as a country have just begun to accept persons with disabilities as first-class citizens. It has been merely eighteen years since the Americans with Disabilities Act (ADA) passed. Culturally, we are slowly catching up with the policy passed nearly a score ago. The past has certainly shaped where persons with disabilities stand today.
Despite nearly fifty years of international policy work, including the United States, on equal education for persons with disabilities, this work remains largely symbolic. Effective methods of inclusive education practice remain to be seen on anywhere other than a local level. From the beginning of the disability rights movement,
“…people with disabilities have recognized the right to education as key to employment opportunities, quality of life, self-advocacy, empowerment, social justice, and equity in society at large (13).”
With high school graduation rates for individuals with disabilities at just 57%, compared to 75% of those without disabilities (14), it can be seen that these individuals are missing more than just the prom and a few math courses. Individuals with disabilities are less likely to be able to self-advocate, a key in today’s fragmented healthcare system. With forces working against women with disabilities, self-advocating is necessary to receive appropriate care, such as mammograms.
Employment is also a shaping force in the cultural context of women with disabilities. According to a 1998 study, 79% of non-disabled persons of working age were employed, whereas 29% of people with disabilities of working age were employed. Of the 29%, many are employed in marginal jobs, and of the remaining unemployed, many have job searched for years to no avail and give up in discouragement. Also consider that women with disabilities may encounter two counts of employment discrimination, based on both gender and disability (15). Employment is linked to tangible benefits that help individuals to access preventative health care, such as higher income and health insurance. The intangible benefits of employment for persons with disabilities include a greater sense of control over one’s life. For the vast majority of women with disabilities without the benefits of employment, preventative health care measures can fall to the wayside.
The history and cultural implications of eugenics from the early 20th century still resound today, specifically in health care. Block et al (16) discuss how the institutionalization and sterilization of the “feeble-minded” still affect persons with disabilities today. Persons with disabilities were then sterilized because they were thought to have variant sexuality from the rest of society and because eugenists wanted to purge society of their supposed detrimental genes. The pervasive and skewed belief of women with disabilities as aberrant (both on the whole and sexual levels (3)) has shaped how women and their sexual health, including mammography, are still viewed today by society-at-large and healthcare providers.
Psychology of Disability.
Approximately 11% of individuals without a disability living in the United States have moderate to severe depression. In comparison 20-30% of individuals with a disability have depression (17). Also consistent with the increase in depression in individuals with functional limitation is the pervasiveness of anxiety (18). Another compounding factor is that women are twice as likely as men to have depression (18,19). Depression can affect mood, appetite, sleep patterns, and social interactions. It is often a challenge for an individual with depression or related mental health issues to attend scheduled doctor’s appointments. The effect of depression on an individual’s self-efficacy should not be underestimated. BHAWD ignores mental health in their intervention, despite its prevalence in women with disabilities.
In addition to comorbid mental health issues, persons with disabilities may have anxiety over discovering they have another health issue to cope with, such as breast cancer. This anxiety may lead to avoidance of prevention and screening, such as mammograms. Unfortunately the literature on barriers to screening in women with disabilities is scarce and evidence remains largely anecdotal (3).
Self-efficacy is also a determining factor for receiving mammograms and was overlooked by BHAWD. Because of the paucity of literature on self-efficacy and disability, a study examining self-efficacy and pain-related disability can illustrate the effects. Arnstein (20) found that self-efficacy is inversely related to levels of disability, meaning that individuals with more self-efficacy found their situation to be less disabling. Depression also acted as a mediator in the relationship between self-efficacy and disability. It can be implied that women with more self-efficacy will perceive a lower level of disability. It has already been shown in the literature that women with lower levels of disability receive mammograms at a higher rate than their peers with more disability (11).
Looking Forward…
In my research I was able to find many published articles on mammography and women with disabilities, but a majority of them relied on the Health Belief Model or other individual-level models. The individual-level model is exactly what I have critiqued about BHAWD, so this literature needs to be taken with a grain of salt. After working with women with disabilities on a mammography project, it was apparent that forces larger than the individual are essentially choosing for women whether or not they will have a mammogram: insurance company and Medicare denials, a multiplicity of providers and specialists, facilities with inaccessible radiology equipment, etc.
As we move forward into the 21st century, advances must be made in the field of disability, in particular for women. The baby boomers are aging quickly and individuals with disabilities are living longer and longer so disability will become more prevalent in our society. New research techniques, such as qualitative methods, and social science models, such as framing theory and social expectations theory, must be employed if progress is to be made. Most importantly, we must educate our providers en masse, via medical and nursing schools, to erase institutional biases.
And Moving Forward.
These three critiques of BHAWD are meant as a starting point from which to create an improved intervention for increasing access to mammography for women with disabilities. Building upon what I have learned from my research, I propose a report entitled “Educating Tomorrow’s Doctors: Improving Medical School Curriculum to Better Serve Patients with Disabilities.” A curriculum recommendation for American medical schools, this new intervention aims to address the three main weaknesses of BHAWD. Developed based on literature and expert recommendations, this report would advise medical schools to incorporate a focus on individuals with disabilities into their existing curriculum. Saketkoo et al (21) showed a positive change in knowledge, skills and attitudes towards disability issues after a one-time, three-hour workshop for fourth year students. A nationwide recommendation can hopefully amplify the effect seen in this workshop at Tulane.
Go Beyond the Individual.
As discussed, BHAWD focuses on the individual, assuming that changing individual behavior will resolve the issue. To improve upon this, “Educating Tomorrow’s Doctors” goes beyond by moving to a group-level intervention targeting medical students. Evidence illustrates that a large reason for the lower rates of mammography in women with disabilities are provider beliefs and attitudes (3-6).
An individual-level intervention can only hope to change mammography rates at a 1-to-1 ratio, at most, meaning for each person targeted, at most one person will be affected. A group level intervention such as this curriculum recommendation can ripple much farther. For each doctor educated about disability issues, it can be assumed that they will positively affect most, if not all, of their patients with disabilities. A group-level intervention gives a much greater return on the investment.
“Educating Tomorrow’s Doctors” targets the root of the problem. BHAWD could be the best individual behavior change intervention in existence, but with a cause beyond individual behavior, the intervention will only be treating the symptom of a larger issue. By targeting the root of the problem and reaching all future physicians, “Educating Tomorrow’s Doctors” eliminates the need for an individual behavior change intervention. The curriculum recommendations will improve mammography rates among women with disabilities, and beyond, as doctors well versed in disability issues will positively influence the 49.7 million Americans with disabilities (22).
To ensure “Educating Tomorrow’s Doctors” is widely accepted, I will employ Social Expectations Theory and Framing Theory, both group-level theories. First with Social Expectations Theory I will work to receive the endorsement of the Association of American Medical Colleges (AAMC). Second, I will seek to pilot the AAMC-endorsed recommendations at a few prestigious medical schools, such as Harvard or Johns Hopkins. Using top-notch medical schools as an example, the social norm will become incorporating a disability focus into curriculums and other medical schools will hopefully follow suit and adopt the recommendations.
Framing Theory will assist in getting the recommendations adopted, as I will frame including a disability focus as a cornerstone of medical education. By publicizing that 1 in 5 Americans has a disability (22), no longer can learning about disabilities be considered an elective or extra material. Medical schools must incorporate a focus on disability, otherwise they will be leaving future doctors unprepared for the needs of 20% (and rising) of the patient population.
Incorporate all Contexts of Disability.
The societal and historical context plays a large role in how providers today look at and treat women with disabilities. In part, the past systemic medical mistreatment of women with disabilities can only begin to be healed by providing our future doctors with factual information rather than allowing unexplored misconceptions to persist.
“Educating Tomorrow’s Doctors” will encourage examining the clinical and biological aspects of disability in a medical school classroom, in hopes of dispelling many commonly held myths. In the case of mammography, an incorporation of a disability focus into coursework on the reproductive system is necessary to educate that women with disabilities commonly have normal, functioning reproductive systems, including their breasts. Women with disabilities are often viewed as asexual or their disability is also assumed to affect their reproductive system (3). This myth may lead to doctors skipping recommended screening guidelines, such as mammograms, to women with disabilities.
In addition to providing scientific information on disabilities to medical students, the report will recommend incorporating the history of maltreatment of persons with disabilities into a medical ethics seminar or class. This will hopefully bring a two-fold improvement in doctor training, as they will be equipped with both medical facts to appropriately treat patients with disabilities, while understanding the past and root of the problem.
Address Psychological Issues.
As shown, “Educating Tomorrow’s Doctors” aims to enable medical schools to easily add a disability focus to curriculums. Many of the given recommendations are for various adaptations that can be made to existing curriculums, rather than reinventing the wheel. One suggestion is targeted to show providers the individual psychology of disability, in addition to the clinical aspects. Currently some medical schools, such as Mount Sinai School of Medicine, have a longitudinal clinical experience. In this experience, each student is assigned to and follows one patient for two (or more) years. “Educating Tomorrow’s Doctors” would take this excellent program one step further by recommending that each student be paired with a patient with a disability.
By building rapport and being able to focus on a caseload of one, the future physician can witness the psychological and social aspects of living with a disability. Seeing the same patient over a few years can show possibly unveil mental health issues, such as depression or anxiety, and the effect this has on the patient’s ability to seek healthcare services. This comes in addition to participating in the clinical aspects of a complicated case over time. The student should be encouraged to both act as an advocate and a navigator of the health care system throughout their time with the patient with whom they are paired. This will give the student hands-on experience in order to develop his or her own tools for motivating and counseling patients with disabilities.
Longitudinal clinical experience not only builds an intimate clinical understanding of disability over time, but increases one’s sensitivity to disability-specific issues. In the case of mammograms (or any other screening activity), the future physician will have the chance to see complex psychological issues, including the thought that having a disability makes one less susceptible to other health problems. Medical students may even gain a first-hand look at what it might mean to someone with a disability to discover another health burden. This sensitivity to patients with disabilities is a key element, because a doctor well-versed in clinical disability issues will still not connect with a patient if psychological aspects are ignored.
Change that Benefits All.
A colleague of mine recently told me that we are all temporarily able-bodied. This seems especially poignant when examined in the light of our rapidly aging society. With increased life expectancy, one has a greater chance of experiencing some form of disability. Consequently, curriculum reform such as “Educating Tomorrow’s Doctors” would benefit more than just women with disabilities. It will help everyone with a disability, whether temporary or permanent. This will inevitably include our family members, our friends, and possibly someday ourselves. Even if you are lucky enough to go through life without being touched by disability, having a provider who is better able to contextualize clinical care will certainly help us all.
REFERENCES
1. Breast Health Access for Women with Disabilities. Berkeley, CA: Breast Health Access for Women with Disabilities. www.bhawd.org.
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