Quality primary care is a critical linchpin in efforts to improve the health status of persons with disabilities (PWDs) and is a national goal articulated in Healthy People 2010.1 The problems PWDs face finding and accessing primary care services, first “formally recognized as a deficiency in the health care system” in 1989,2 persist to this day.3–5 Providing disability-related training to physicians in the adult generalist specialties (i.e., family medicine and general internal medicine) is essential to support these physicians' efforts to manage the care of patients with disabilities, but there is limited information about what generalist physicians need to know to guide training initiatives.
For adults with disabilities, problems have been reported at multiple levels of the primary care experience. These include problems at the level of the medical interview itself, such as failures in communication that interfere with medical history taking, compromise patients' understanding of treatment regimens and risks, and detract from patient satisfaction6–18; inattention to patients' concerns about maintaining daily activities11; and difficulties accommodating patients who require more time for office visits.2,11,12,17 It also includes accessibility and attitudinal barriers that interfere with the timely provision and completeness of physical examinations, diagnostic procedures, and screening and preventive services,2,8,9,12,18,19 and practice operations that fail to anticipate and prepare for disability-related issues in advance of visits.17,18 Problems with the delivery and financing of health care services nationwide exacerbate the challenges generalist physicians face in meeting the needs of adults with disabilities.20 Generalist physicians caring for children with disabilities face similar challenges, but they generally derive support from the organized network of services in place for children with disabilities through school systems and more robust health insurance benefits. The network of services and supports in place to promote the health of children with disabilities is not available to adults with disabilities or their physicians.
In this article, we use Bloom's21 taxonomy to explore the desired educational outcomes of disability-related training in the pursuit of an optimal primary care experience for adults with disabilities. Bloom's taxonomy refers to a framework for understanding and conceptualizing the realms of educational outcomes based on three domains: cognitive (knowledge), affective (attitudes and values), and psychomotor (skills). This framework is used widely in the health care education literature, including studies and commentaries focused on disability-related training.22–28 A clearer delineation of desired disability-related training outcomes is essential to efforts to better prepare generalist physicians to care for adults with a range of disabilities—congenital or acquired; physical, intellectual, or psychiatric—and to evaluate training strategies for doing so. This article is based on the literature and on our own experiences teaching medical students about the needs of patients with disabilities. Our group, the Alliance for Disability in Health Care Education, includes medical educators and other health professions educators, some of whom bring their personal and professional experiences living with disability to this discussion, including their experiences as primary care patients.
Definition of disability
In our work, we use Iezzoni's11(p977) definition of disability: “difficulty performing daily activities and fulfilling social roles because of physical, sensory, emotional, or cognitive impairment, often compounded by environmental barriers.” This definition combines the essence of the biomedical definition of disability with the more contemporary social model. The former emphasizes personal characteristics, such as medical conditions and impairments, and the need to fix them. The latter considers an individual's ability to function in the presence of an impairment to be determined largely by his or her physical and social environment, and seeks to optimize individual functioning by changes at the institutional, community, and societal levels. One's definition of disability influences the knowledge, attitudes, and skills that are viewed as prerequisites for the optimal care of patients with disabilities. The perspective on disability that generalist physicians hold may influence how patients with disabilities view their physicians and, ultimately, those patients' perceptions of the acceptability of the care they receive.
Meeting the primary care needs of persons with disabilities
PWDs have the same needs for clinical prevention and health promotion services, acute care, and care for common chronic conditions as persons without disabilities.20,29 Some PWDs have special needs that are specific to their primary impairment or medical condition or that reflect a “thinner margin of health”20,30 and make them susceptible to preventable secondary conditions and medical complications.20,29,31 Some also face health risks because it is more difficult to engage in healthy behaviors, such as regular physical activity and healthful diets.20 Healthy lifestyles are particularly important now that many more PWDs live to average life spans, increasing their risk for common chronic conditions associated with the aging process as well as with their primary conditions.31,32
Most medical educators agree that technical competence is a necessary component of what the generalist physician should know about patients with disabilities, but technical skills alone are not sufficient to provide high-quality primary care to PWDs.33,34 In two core disability curricula designed for medical schools in Australia26 and Britain,35 a greater number of attitudinal topic areas were deemed essential than were topic areas related to knowledge or skills. More recently, Kirschner and Curry36 proposed six core competency areas to guide the development of disability-related learning objectives in health professions curricula. These core competencies emphasize the acquisition of knowledge and skills.
Desired Educational Outcomes
The social definition of disability reflects a complex interplay between the individual and his or her social and physical environment. Because efforts to promote and protect the health of PWDs are optimally approached from the combined social and physical perspective, we use the social-ecological framework to consider the knowledge, attitudes, and skills that generalist physicians should possess to care for patients with disabilities.37 The social-ecological framework is a health planning model that is predicated on the belief that optimal health reflects individual, interpersonal, organizational, community, and public policy influences. It fits well with the social definition of disability, and may be useful to physicians who are unfamiliar with this definition. See Figure 1 for an illustration of this framework.
This framework assumes that generalist physicians have the potential to optimize the health status of patients with disabilities through interventions at multiple levels, but that doing so requires not only knowledge but also appropriate attitudes and skills.
Within medical education, knowledge encompasses the sciences fundamental to medical practice and their clinical applications and is evaluated by the United States Medical Licensing Examination (USMLE).38 It is encouraging that the content descriptions for USMLE Step 1 (basic science knowledge) and USMLE Step 2 CK (clinical knowledge) list developmental disabilities and other disability-related content, respectively.
Empirical data describing what health providers know about the care of patients with disabilities are limited, although evidence suggests that a lack of knowledge is a problem.20,36,39–44 For the purpose of this discussion, we include the issues presented in List 1 within the realm of knowledge.
Although knowledge provides a foundation on which to build an understanding of problematic issues and for the development of solutions to those issues, research has shown that enhancing knowledge is not sufficient for influencing behavior.45 If our end goal is to influence the behaviors of generalist physicians in training and in practice, didactic instruction aimed at imparting knowledge is a necessary but perhaps insufficient modality. Fortunately, medical education is not concerned solely with imparting knowledge.
Studies have examined various health professions students' attitudes regarding disability following disability-related educational interventions.8,46–52 Generally, these studies report that, without intervention, student attitudes toward PWDs do not support positive patient–provider interactions, albeit with some exceptions.22 Studies regarding the quality of life of PWDs report wide variations in the attitudes reported by physicians compared with the attitudes of PWDs.17,23 Research has demonstrated that direct and positive exposure to a disfavored or marginalized group (i.e., exposure in which members of that group are viewed as capable, likable, etc.) increases positive attitudes toward that group. Recent research suggests that these positive exposures can favorably influence even those deeply entrenched and implicit (i.e., unconscious) biases that are sometimes assumed to be intractable.53 This suggests that training programs, in order to substantially affect deeply held attitudes toward PWDs, should include substantial positive contact with such persons. Such positive exposure is found in some existing programs.8,22,52,54
Such contact should not be limited only to courses focusing on the interpersonal aspect of medicine. In one study, medical students who were asked for suggestions about disability-related training viewed the presence of PWDs in hard science courses, where they discussed physiological aspects of their conditions and the impact on their lives, as providing compelling and memorable lessons.15 In contrast, these students felt that adding disability as another patient attribute deserving empathy to courses viewed as “touchy feely” may hinder rather than help awareness of disability-related issues, perhaps reflecting what might be a broader lack of appreciation for courses intended to promote humanistic practice. It is worth noting, however, that these same students reported that such courses proved valuable later in their education as they began learning to take histories and conduct physical examinations. These students preferred interacting with real patients to exercises where students themselves were asked to simulate the experience of having a disability (i.e., through use of a wheelchair, blindfolds, etc.)55; others have found simulation exercises to be valuable.34,39 It is also possible to incorporate more ongoing contact with PWDs through home visits, following specific patients, and other approaches.39 We propose including the elements in List 2 within the attitudinal domain.
For the purpose of this discussion, skills are defined as technical or social competencies that are reflected in observable actions. Studies evaluating physicians' skills with patients with disabilities seem limited and focused largely on the effectiveness of their communication skills; findings suggest deficiencies in this area.14 Skills to communicate effectively with PWDs are high on the lists of requisite disability-related competencies generated by health profession educators.6,8,9,14,16,17,40,54,56,57 Another important skill is the assessment of a patient's level of functioning. This skill enables a physician to establish a baseline for the tracking of progressive impairments (or identifying the presence of associated or secondary conditions), predicting prognoses and planning interventions, such as referral to physical therapy or for assistive devices such as a wheelchair.58 In addition, the assessment of function can be useful for administrative purposes, including those that are intrinsic to medical treatment, such as documenting the need for certain services,58 and those that may assist the individual in obtaining needed resources, such as Social Security benefits or medical assistance. We do not know of any studies evaluating physicians' skills in assessing the functional levels of patients with disabilities. We propose the elements in List 3 to be within the realm of requisite skills.
The importance of role models
Although didactic presentation of information is helpful in the development of some of these skills, additional direct demonstration and practice are likely necessary. Physician shadowing or clinic-based experiences that involve observed and/or direct contact with patients, or standardized patient exercises in which skill-related challenges are presented in a controlled context, are critical.59 In addition, senior and more experienced physicians are important sources of influence for students and early practitioners by transmitting knowledge and demonstrating attitudes and skills. To the extent that they display appropriate competencies when treating patients with disabilities, they can be powerful agents of change.
Knowledge, attitudes, and skills as interacting dimensions
Knowledge, attitudes, and skills do not act independently. A training program might contribute a skill, such as the ability to position a patient with a physical disability for a physical examination, to a student's “toolkit.” That skill will only be put into practice, however, in the presence of attitudes that prompt the student to use it. Similarly, a training program might impart knowledge, such as the array of conditions associated with a primary disabling condition, but that knowledge will not be useful without well-practiced skills in clinical interviewing or physical examination with patients with disabilities. Students' and physicians' awareness of their lack of knowledge and skills necessary to work with patients with disabilities is associated with discomfort19,23 and may perhaps be one source of negative attitudes toward such patients.
Evaluation of Disability-Related Training
In any educational endeavor, the measurement of educational outcomes is necessary to ensure that the impact of training is well understood and that this information is used to improve the intervention. Strategies exist within each of Bloom's educational domains to measure the outcomes of disability-related training, although the application of these strategies is in its infancy.
Written or oral assessment of the attainment and retention of information is an appropriate strategy to measure learner knowledge gain. One example here might be the use of a written test to assess students' understanding of associated medical conditions that commonly accompany primary disabling conditions, or of laws, regulations, and policies concerning availability and accessibility of health care for PWDs. Knowledge can also be assessed through observation of practical application of information gained as the student encounters patients in real or simulated clinical situations.
The measurement of attitude change, although often used in evaluating training regarding special populations or those in which health disparities exist, might be somewhat less straightforward. Although there are scales designed to measure the attitudes of other medical professionals,60,61 there is currently no known validated scale designed specifically for measuring the attitudes of medical students toward PWDs.62 Many of the validated scales available are either quite dated63–67 or measure relatively broad attitudes toward PWDs, with their direct applicability to physicians' attitudes toward their patients not clearly established.68,69 A more vexing problem with attitude measurement is the tendency to respond to attitude scale items in the way that the respondent perceives is expected by faculty, or based on differences between consciously recognized attitudes and those unrecognized attitudes that also drive behavior. Tests of implicit (i.e., unconscious) attitudes are intended to address these problems in attitude measurement, and implicit tests of attitudes regarding disability have been offered,70 including one that assesses health care workers' unconscious attitudes toward patients with developmental disabilities.71 Their reliability and validity as measures of attitude change, however, are not yet fully established.
A student's attainment of skills can be measured through direct observation of the student's performance in either real or simulated encounters with patients (e.g., OSCEs). This would include such activities as conducting a medical history72 or going through the sequence of steps to transfer a patient from a wheelchair to an examination table.
Behavioral change in practice.
In evaluating efforts to teach medical students and physicians in training about disability, it is important to assess progress toward the end goal: change in actual behaviors toward patients with disabilities that last into the student's professional life. Some interventions intended to influence the behavior of physicians toward patients with disabilities might show some impact in the short term but without lasting effects.73 It is much easier to evaluate changes in behaviors following a disability-related educational intervention while the student is enrolled in the training program and is, if not a “captive audience,” at least easily accessible.74 Changes in behavior can be studied in a controlled context (such as a standardized patient),8,42,74 or they can potentially be studied in the context of supervised practice, such as during rotations or internships. Evaluation of the long-term impact of disability-related training among practicing professionals is generally not available. Nonetheless, avenues of assessing longer-term impact on behaviors in posttraining professional practice must be pursued.
Educating Physicians for the Benefit of All Patients
It is important that adults with disabilities each have at least one physician who focuses on the whole patient within the context of an ongoing, long-term relationship. In most situations, this physician would practice a generalist specialty, optimally working in coordination with subspecialty physicians and allied health professionals who might also be involved with the patient's care, yet such coordination presents logistical and financial challenges, in addition to the challenges inherent in the direct provision of care.
For adults with disabilities, practice supports can be particularly effective. However, the lack of universal education requirements and uncertainty about the desired outcomes of disability-related training in the context of primary care may inhibit support for training initiatives designed to support quality primary care for PWDs. Lack of knowledge about the universe of practice supports for patients with disabilities and their potential impact on patient care may similarly hamper support for practice support provisions. The “knowledge, attitudes, and skills” framework we have proposed encompasses both training and practice support elements.
Under current, less-than-ideal circumstances, we believe that disability-related training is appropriate at all levels of health care education and practice and suggest that, given the historical lack of such training, even residents and the most seasoned generalist physicians could benefit from exposure to the most basic information (knowledge), to positive interactions with persons who have disabilities (attitudes), and to the opportunities to become more proficient in their interactions (skills). Optimally, these efforts would occur within a context of “substantial rethinking” of physician training and not simply through the addition of a few disability awareness courses.23
Generalist physicians have an important role to play in managing the ongoing health care of adults with disabilities and improving the overall health status of this group, but they have received limited attention in discussions about the disability-related training needs of physicians. The central focus of this article is on improving educational outcomes of the generalist physicians who face unique responsibilities and challenges in providing supports for PWDs by suggesting a comprehensive list of knowledge, attitudes, and skills to shape training and curricula. This approach is in keeping with the current emphasis within medical education on the use of competencies, or knowledge, attitudes, and skills, to guide curricular development and evaluation strategies. Ultimately, our goal is to influence the behaviors of generalist physicians, in particular their posttraining behaviors toward patients with disabilities, by providing training to increase their knowledge, broaden their attitudes, and enhance their skills. Although measurable attainments in knowledge, attitudes, and skills are indeed desired outcomes, the integration of these into behaviors and practices that improve the health of PWDs is the essential and definitive outcome.
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