Abstract

There is evidence that early and frequent encounters with people with disabilities can improve medical students' knowledge, skills, and attitudes about disability. As part of a 4-year integrated curriculum in caring for patients with disabilities, third-year medical students (n  =  144) in a Family Medicine clerkship participated in a day-long precepted clinical experience at a medical facility serving people with disabilities, predominantly developmental disabilities, where they met patients and worked with clinicians. At the conclusion of the program, students completed a reflective survey about their experience. These data were analyzed qualitatively using a constructivist grounded-theory approach. Students' responses indicated that the experience improved their comfort levels in working with people with disabilities and increased their awareness of attitudinal factors that influence patient care. Responses also demonstrated that students achieved an awareness of technical accommodations and organizational adaptations that improve patient care.

Disability is defined as a physical or mental impairment that substantially limits one or more of the major life activities of the individual (Americans With Disabilities Act, 1990). The surgeon general projects that the number of people living with a disability will increase in the coming years as the “baby boom” generation ages and medical advances improve life expectancy for chronically ill patients (United States Department of Health and Human Services, 2005). These demographic trends will necessitate developing the capacity of the U.S. health-care system to provide comprehensive care for people with disabilities.

People with disabilities face significant barriers to accessing quality health care. Despite the requirements of the Americans With Disabilities Act, many primary care offices do not have equipment to meet the basic clinical needs of people with disabilities (Drainoni et al., 2006). Also, people with disabilities often have comorbidities requiring advanced care coordination, though few clinics are able to offer integrated treatment (Aday, 1993). Finally, many studies have documented that physicians often feel uncomfortable treating people with disabilities and underestimate those patients' cognitive and communicative abilities (Aulagnier et al., 2005; Drainoni et al., 2006; Jackson, 2007; McColl et al., 2008; Tervo, Palmer, & Redinius, 2004).

There is evidence that early and frequent encounters with people with disabilities can improve medical students' knowledge and attitudes about disability, thereby increasing their comfort level in providing care to people with disabilities (Brown, Graham, Richeson, Wu, & McDermott, 2010; Jackson, 2007; Larson McNeal, Carrothers, & Premo, 2002; Long-Bellil et al., 2011; Rose, Kent, & Rose, 2011; Thistlethwaite & Ewart, 2003; Tracy & Iacono, 2008). Few medical schools, however, offer curricula to address these issues (Crotty, Finucane, & Ahern, 2000; Jackson, 2007; Martin, Rowell, Reid, Marks, & Reddihough, 2005; Symons, McGuigan, & Akl, 2009).

The University at Buffalo School of Medicine and Biomedical Sciences has instituted a longitudinal curriculum that is integrated into all four years of the program. The curriculum was designed to enhance medical students' knowledge, attitudes, and skills pertaining to providing patient-centered care for people with disabilities (Symons et al., 2009). This curriculum design was guided by Kolb's (1984) experiential-learning theory, which suggests that immediate or concrete experiences provide a basis for observations and reflections. These observations and reflections can be distilled into abstract concepts, which can be applied in other settings. In the third year, all medical students participate in a 1-day precepted clinical experience at a local medical facility that provides primary care and integrated services for people with disabilities, predominantly developmental disabilities. Healthy People 2010 (United States Department of Health and Human Services, 2000) stresses that, for purposes of improving care of people with disabilities, the similarities among people with disabilities are as important as or more important than the differences among clinical diagnostic groups. Although most student exposure was with people with developmental disabilities, the lessons learned in these interactions can be applied to caring for diverse populations of patients.

The students are required to complete a survey reflecting on their experience. Understanding the students' experiences as part of this curriculum is important in evaluating early exposure to caring for people with disabilities and in helping guide future curricular development. The purpose of this study was to examine student reflections about the precepted experience in a medical facility that provides primary care and integrated services to people with disabilities, predominantly developmental disabilities.

Method

Curriculum

In recognition that his own medical training was deficient in exposure to caring for people with disabilities, one of the authors of this article developed and implemented a four-year curriculum in caring for people with disabilities. The curriculum is described in detail in a previous publication (Symons et al., 2009). The curriculum is integrated into existing course curricula in all four years of medical student education. Students in their first year receive a lecture on disability and society from a community agency that provides health and social services for people with disabilities. The presentation is followed by small-group encounters with people with disabilities and their families, who discuss both the positive and negative aspects of their interactions with the health-care system. Second-year students receive a presentation on aspects of the clinical encounter with people with disabilities. They also participate in a disability-related objective structured clinical encounter, for which people with disabilities are trained to serve as standardized patients who portray a medical concern and are interviewed and examined by students in this structured setting. Third-year students in the Family Medicine clerkship spend one day in a precepted clinical experience in a facility which provides primary care and ancillary services for people with disabilities (this activity is the focus of this article). They also participate in a half-day workshop on the socioeconomic and legal context of caring for people with disabilities. During the Internal Medicine clerkship, third-year students participate in a didactic presentation on common medical concerns of people with disabilities. Fourth-year students may choose to participate in a 4-week elective on primary care for people with disabilities. The curriculum was first implemented in 2008 and remains operational.

Description of the Clinical Experience

The 4-year curriculum was designed to progress from discussion (Year 1) to skills practice (Year 2) to clinical care (Years 3 and 4). During the required 6-week Family Medicine clinical clerkship, third-year medical students spend one day in a precepted clinical experience in one of three local medical facilities that provide primary care and integrated services for people with disabilities, predominantly developmental disabilities. The students are introduced to the facility by administrative personnel. The clinical preceptors (doctors, nurse practitioners, and physical and occupational therapists) encourage the students to communicate with patients, guide the students in examination techniques, and point out elements of care that are particularly important in caring for this patient population. Throughout the day, students observe and assist the facility's clinicians and staff. Upon completion of the clinical preceptorship, students are asked to submit their written reflections about the experience.

Data Collection

A survey was designed consisting of seven open-ended reflective questions about the students' precepted experience at the medical facility ( Appendix). Items for the survey were developed through collaborative discussions among medical educators, patients, and health-care providers with experience in caring for people with disabilities. In developing the survey, we relied on empirical experience as well as literature about barriers to care for people with disabilities (Drainoni et al., 2006; Veltman, Stewart, Tardif, & Branigan, 2001). Students were asked to reflect upon the site accommodations, similarities to and differences from other precepted experiences, general thoughts about their experience, a memorable patient encounter, and helpful information for students who will go to the site in the future. The students completed the survey online using a web-based application that the medical school uses for scheduling, surveys, evaluations, and tracking student clinical activities. All survey responses were confidential and anonymous. This study was deemed exempt by our university's institutional review board, since the reflection was part of normal educational practice.

Data Analysis

The data were analyzed by a team that included a doctoral student in anthropology with expertise in qualitative analysis, a medical educator (non-physician) involved in the development and implementation of the curriculum, and a physician who was not directly involved in implementing the curriculum but was familiar with working with people with disabilities.

Student responses were qualitatively analyzed in duplicate using a constructivist grounded-theory approach (Charmaz, 2005; Crabtree & Miller, 1999). This approach entails an iterative, systematic process of reviewing reflective responses, identifying segments representing themes, assigning codes to the specific themes, and organizing the themes into categories. The process is repeated until no new themes emerge and saturation is reached.

Two investigators coded and categorized each of the reflective surveys independently. They marked in specific responses as units of data and wrote descriptive phrases in the margins to be used as codes, which they then organized into thematic categories. Saturation was reached when investigators could not independently identify any new themes. At this point, the two investigators met to review, compare, and reach consensus on the codes and themes. The physician member of the analytic team helped clarify the clinical context of the identified themes when needed.

The comprehensive list of themes was charted in Microsoft Excel 2007 and used to track the frequency of responses. The frequency of responses was compared between reviewers and used as a preliminary method to determine if the independent reviewers were reaching similar conclusions. The comprehensive list of themes was organized into major thematic categories. Researchers then used WEFT Qualitative Data Analysis Software (Fenton, 2006) to create a thematic tree which mapped major recurring themes, subthemes, and the criteria students used to develop these themes. The software then linked themes to salient direct quotations.

Results

From November 2008 through December 2009, 147 third-year medical students completed the Family Medicine clerkship. One hundred forty-four students participated in the 1-day clinical experience and completed the survey (100% response rate). Three students did not participate in the clinical experience due to cancellation by the medical facility.

General Findings

The majority of third-year medical students considered this precepted experience working with people with disabilities as a valuable part of their education. They reported that the inclusion of a precepting site specifically focused on caring for people with disabilities allowed them to acquire experience and knowledge they would not otherwise have gained.

Four themes emerged from the qualitative analysis: (1) communication strategies, (2) attitudes and comfort about disability care, (3) organizational structure of the medical facility, and (4) environmental and technological accommodations at the medical facility.

Theme 1: Overcoming Communication Barriers

Students identified the need to adopt effective communication strategies as an important difference between working with patients in a disability-specific facility and working with patients during other clinical rotations. They felt that compiling an accurate medical history required communicative adaptation. In many cases, the patient encounters forced students to revise the way they defined and approached patient communication. As one student described a patient encounter, “This patient was non-verbal but when introduced to me, immediately offered his hand to shake. Reminded me that he's able to communicate and interact, just in a unique way.”

Working with patients with cerebral palsy in the precepted visit made students more aware that even highly intelligent patients may have difficulty communicating. As one student wrote: “One patient, confined to a wheel chair with cerebral palsy, was going through his swallowing therapy session when I met him. This individual's ability to communicate with others despite his severe neurological deficit surprised me. … [T]he necessity for face to face interaction and quiet patience is absolutely imperative to treating and understanding CP (cerebral palsy).”

Direct observation of clinicians in the health-care setting helped students learn communication techniques. As one student responded, “I particularly enjoyed observing the psychiatrist during his clinic session. Each patient visit was brief, yet he managed to give the patient and patient's family an opportunity to discuss their concerns and goals for treatment.”

In a few instances, the direct observation allowed students to confront and reflect upon the negative consequences of poor communication with people with disabilities. Students noted that failure to achieve effective communication would make it nearly impossible to provide high-quality care. As a result, nine students requested additional training in communication techniques specific to people with disabilities.

Theme 2: Attitudes and Comfort Level Working With People With Disabilities

The majority of the respondents reported that the experience made them more comfortable with caring for people with disabilities. Other students stated that, through prior experience, they were already comfortable with this population. A small minority of students (2) reported negative experiences. Only one student felt the immersion program was not a worthwhile addition to the medical education, though the student's concerns related to logistics of off-campus travel rather than to the content of the curriculum. Another student reported an observation about a behavioral issue that made the student feel uncomfortable and aware of how challenging providing care for people with disabilities could be, though this student concluded that the program was valuable. Overall, students were impressed with the patients' intelligence and tenacity, and with the effort that the patients put into their medical care. One student commented, “I was particularly impressed with one patient who I worked with in the PT/OT (physical therapy/occupational therapy) gymnasium. She has mild mental retardation and gained the habit of walking with her hip abducted, so she comes to PT to work on her walking. She was so determined and hard-working, and on top of that she was a truly caring, kind, and appreciative person. She was quite an inspiration.”

Students highlighted an open mind as necessary for effective treatment of people with disabilities and stated that physicians should avoid making assumptions when treating people with disabilities. As one student wrote, “One patient before precepting I would have given up on her as being non-communicating. I was taught to give her enough time and she will eventually respond to my questions. I'm sure had I bypassed her and talked solely with the caregivers that would have ruined the doctor-patient relationship.”

Another wrote, “We saw a patient with spina bifida. She was very upbeat and high functioning when most doctors in her past told her that she wouldn't be. She gave us some excellent tips for MD's who are caring for patients with disabilities. Namely, not to talk down to them. Many times they know more than we do.”

Students stated that people with disabilities deserve the same standard of care as patients without disabilities, even if it requires more resources to provide that care. Respondents also realized that if a person's disability becomes a physician's central focus, the physician might attribute a symptom to the disability when in fact it is a symptom of an unrelated condition. Students reported surprise when they realized that patients with disabilities who were being treated for depression were depressed for reasons attributable to causes other than their disability.

Theme 3: Organizational Structure of the Medical Environmental

Students identified scheduling longer appointments, working with caregivers, and taking a collaborative approach to patient care as important organizational solutions when treating people with disabilities. These students recognized that effective coordination of care and provision of multiple services at one site were essential. For example, one student wrote that, at these facilities, “there were physicians who have experience treating the disabled patients, there were adjunct services like PT, OT, and speech therapy present so the patient does not have to travel to multiple locations to receive care.” Such responses demonstrate a recognition that people with disabilities often require a wide range of services and that multidisciplinary care teams are an effective method for health-care delivery.

Theme 4: Environmental and Technological Accommodations at the Medical Environmental

Through the precepted experience, students gained an awareness of useful technological accommodations at the medical facility. Students commented on the specialized equipment and accommodations at the facilities, including low exam tables, low counters for check-ins, lifts to transfer patients from chairs to beds, and so on. Students also commented on the accessibility of the sites, including ramps to enter the facility, automatic doors, wide hallways, and ground-floor locations. Additionally, students noted the importance of the methods of transportation to the facility.

Discussion

The objectives of this study were to understand medical students' perceptions of a clinical experience in a medical facility that provides primary care and integrated services for people with disabilities, primarily developmental disabilities; to assess the impact of the clinical experience on student knowledge of disability; and to use this information to further enhance our longitudinal disabilities curriculum. Overall, third-year medical students thought the experience was valuable, and the majority of students stated that the program improved their comfort level in treating people with disabilities. Student responses indicate that students gained a more positive perception of people with disabilities and that the curriculum increased their awareness of organizational and technological accommodations. We used the reflective survey as a tool to evaluate this precepted experience in the larger context of our 4-year-long disability curriculum.

One common theme from the student reflections was an acknowledgement that caring for people with disabilities required a change in their attitude as opposed to merely a change in medical practice. This is important, given that previous research has indicated that physician attitudes and stereotypes about people with disabilities remain a significant barrier to quality of care (Drainoni et al., 2006; Field, Jette, & Institute of Medicine, 2007). For example, clinicians will occasionally assume that patients who experience communication difficulty due to a physical disability also have a cognitive disability (Nosek, Howland, Rintala, Young, & Chanpong, 2001). It is clear that immediately following this experience, students understood the need to be open-minded and not rely on their previous assumptions and stereotypes.

An additional consequence of this clerkship experience was that students were exposed to medical care that was organized in a manner consistent with the principles of the patient-centered medical home. As defined by the American College of Physicians, “In a medical home, responsibility for care and care coordination resides with the patient's personal medical provider working with a health care team. Teams form and reform according to patient needs and include specialists, midlevel providers, nurses, social workers, care managers, dieticians, pharmacists, physical and occupational therapists, family and community” (Rosenthal, 2008). Many students recognized that this model improves coordination of care because the availability of physicians and ancillary services at one site eliminates travel to multiple sites and allows for improved communication and longer appointment times. Our hope is that early exposure to the patient-centered model of care will encourage students to incorporate this model in their practice. The use of multidisciplinary care teams and enhanced care coordination is important not only for people with disabilities, but for all people with chronic conditions (Nutting et al., 2009). Though students were able to recognize the importance of these process innovations for people with disabilities, they were not asked to extrapolate these lessons to a larger patient population. As a follow-up to this learning experience, we will ask students to reflect upon how the models of care they observed would impact a broader range of patients.

The study has a number of strengths. All of the students who participated in the immersion program completed a reflective survey. The survey was administered online to avoid interviewer and response bias. Data were reviewed in duplicate by investigators representing social-science, medical, and educational perspectives. Additionally, the analytic team consisted of researchers both involved in implementation and not involved in implementation of the curriculum. This provided a good balance of familiarity with the curriculum and unbiased analysis.

This study has a few limitations. In order to avoid influencing students' perceptions of the program, students were not asked to complete a pre-immersion program survey. Our results indicating attitudinal change as a result of the program are drawn from the survey question asking about changes in comfort level and from the students' narrative responses. This project also lacks a mechanism to determine if attitudinal changes are sustained over time. However, an attitudinal survey was administered at the start of the entire curriculum (in the first year of medical school) and repeated at the end of the third year of medical school. Preliminary review of these data indicates significant change in student attitudes towards people with disabilities after completion of the entire curriculum, though the effect of this particular clinical experience cannot be teased out in that analysis. Another limitation of this study is that the precepted experience was only 1 day. Administering this reflective piece to students choosing to do a 4-week elective course in caring for people with disabilities might offer deeper insight into the role played by student exposure to this patient population, though it is encouraging that even a limited experience seems to have a profound impact on student perceptions. It would be informative to also survey students in their residency and later as actual practicing physicians.

Implications for Education

This study has a number of implications for medical-student education. As we implemented the curriculum, we became aware of several areas requiring additional curricular activities. This precepted experience occurred in a facility dedicated to caring for people with disabilities, predominantly developmental disabilities. Because interactions occur in a highly structured medical environment, the experience might be thought to unintentionally reinforce a reified conceptualization of disability or the idea that people with disabilities constitute a defined, bounded, and homogenous population easily contrasted with the general population (Campbell, 2009). One goal of this curriculum is to train physicians who will be comfortable caring for people with disabilities in the community. The logistical reality is that in order to provide consistent exposure for students, the training needs to take place in a facility dedicated to working with people with disabilities. Anecdotally, students who experienced the program approached one of the authors and related that they subsequently encountered people with disabilities in community hospitals and doctors' offices and felt that the program had given them confidence in providing care for these patients.

The social model of disability recognizes that disability cannot necessarily be defined solely by a medical condition but is a social construct predicated on cultural beliefs, environmental factors, and social structures (Masala & Petretto, 2008). Although students are introduced to elements of the social model of disability in the first-year introductory lecture and also in the third-year seminar, this message may not translate into the clinical arena and we may need to do a better job of reinforcing social justice aspects of disability as well as conceptual frameworks that explore how our cultural conceptions of disability impact the perceptions and medical treatment of people with disabilities (Couser, 2011). For example, a few students still described patients as having “mental retardation” (as opposed to an intellectual disability), indicating an additional need for content related to social justice and discrimination. Partially as a response to recognition of this concern, we have begun to add additional venues that are not necessarily medical in order to enhance students' experience interacting with people with disabilities, such as an early intervention and preschool program that provides education and recreation to children with developmental disabilities.

Additionally, students indicated a need for training in clinical skills that are particularly important in caring for people with disabilities, such as adapting communication techniques. Students are reminded elsewhere in the curriculum, during didactic sessions, that most of the communication and examination skills used in working with people with disabilities are the very same skills they have learned in providing quality, patient-centered care to people without disabilities. Although this 1-day experience exposes students to adapting these skills for the challenges of clinical encounters with people with disabilities, more time is probably required to further hone these clinical skills. These skills are addressed more deeply in the 4-week elective in the fourth year, but only a subgroup of students choose to take the elective. Incorporating teaching of these skills into other clinical rotations could help address this concern; it would, however, require some faculty development to raise awareness of the need to address these issues when encountering patients with disabilities in community inpatient and outpatient settings.

Students' responses indicated that the experiential program increased their awareness of the importance of attitude, communication, and other subjective factors in caring for people with disabilities. In order to avoid prompting students to give specific responses, the majority of survey questions were open ended; therefore, the fact that so many student respondents were able to identify these subjective factors is significant. Our findings are similar to those of other published studies (Brown et al., 2010; Jackson, 2007; Larson McNeal et al., 2002; Rose et al., 2011; Thistlethwaite & Ewart, 2003; Tracy & Iacono, 2008) and make a strong case that exposing medical students to encounters with people with disabilities early in their training can improve the students' knowledge, skills, and attitudes about disabilities and increase their comfort level in communicating with these patients.

Therefore, medical schools should consider introducing curricula to improve their students' knowledge, attitudes, and skills pertaining to people with disabilities. These curricula would benefit from experiential learning and reflective learning components. An experiential approach towards medical education can introduce students to novel treatment strategies in working with diverse patient populations. For example, an experiential-learning element could be beneficial in introducing students to group home visits as a method for management of chronic diseases. Additionally, experiential learning and participant observation can improve students' skills in cross-cultural medicine and in developing strategies to bridge linguistic and cultural communication barriers.

Implications for Research

The activity described in this article is part of a 4-year curriculum. A preliminary review of attitudinal surveys administered at the beginning of the curriculum and at its end indicate that the overall curriculum has a significant impact on student attitudes and comfort level. The role of this precepted clinical experience in the overall curricular goals needs to be determined. Although this study demonstrated that this experience working in a clinic for people with disabilities affected student attitudes, we need to determine whether the entire curriculum will influence physician practice and ultimately improve patient care.

Conclusion

A 1-day precepted experience working with people with disabilities affected third-year medical students' perceptions of caring for this population. Students reflected on four themes: (1) communication strategies, (2) attitudes and comfort about disability care, (3) organizational structure of the medical facility, and (4) environmental and technological accommodations at the medical facility. This study provides support for including experiential opportunities (even brief ones) in medical school curricula for improving students' attitudes and comfort levels in caring for people with disabilities.

Acknowledgments

This is work was supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration Pre-Doctoral Training in Primary Care Grant, Award number: D56HP10318 (A.B. Symons, Project Director/Principal Investigator).

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Appendix

Reflective Survey

graphic
graphic

Author notes

Editor-in-Charge: Glenn Fujiura

Authors:

Denise McGuigan (e-mail: dpalermo@buffalo.edu), University at Buffalo School of Medicine and Biomedical Sciences, Department of Family Medicine, University at Buffalo, School of Medicine and Biomedical Sciences, Department of Family Medicine, 202 Farber Hall, Buffalo, NY 14214, USA; Renee Karl, Matthew L. Withiam-Leitch, Andrew B. Symons, University at Buffalo School of Medicine and Biomedical Sciences, Department of Family Medicine; and Elie A. Akl, American University of Beirut, Department of Internal Medicine; University at Buffalo School of Medicine and Biomedical Sciences, Department of Medicine; and McMaster University, Department of Clinical Epidemiology and Biostatistics.