Neal-Boylan, Leslie PhD, APRN; Hopkins, Amy MD, PhD, MPH; Skeete, Rachel MD, MHS; Hartmann, Sarah B.; Iezzoni, Lisa I. MD, MSc; Nunez-Smith, Marcella MD, MHS
Efforts in health care to bridge the diversity gap have expanded to include increasing the number of physicians and registered nurses with disabilities in addition to those of other minorities, such as race/ethnicity, socioeconomic status, sexual orientation, and sex.1 Although there is little information reporting the numbers of physicians and nurses with disabilities, 19% of the general adult population in the United States reported having a disability in 2008.2,3 Therefore, it is reasonable to conclude that a substantial number of health care professionals also self-identify as having a disability, defined as an alteration in an individual's capacity to meet occupational demands because of a chronic condition associated with a functional limitation.4,5
Workforce shortages and the aging of the health care workforce mandate that we consider how best to support health care professionals with self-identified disabilities while also prioritizing patient safety. An estimated 40% of nurses in the United States were over the age of 50 in 2010,6 so we should expect increasing numbers of nurses with physical impairments to be part of the workforce in the future.7 Similar trends have been noted among the physician workforce; some areas of medicine, particularly primary care, are also expected to suffer from declining numbers of available physicians.8 Retaining nurses and physicians with disabilities may help to alleviate these shortages.9
Despite numerous anecdotal reports and some survey data,7,10–22 published studies describing the common and disparate workplace experiences of physicians and nurses with disabilities have been absent from the literature. Therefore, we sought to interview representative samples of registered nurses and physicians with self-identified disabilities to generate insights and hypotheses about their professional experiences to inform local and national policy conversations on supporting a diverse health care workforce.
Study design and sample
In 2009–2010, we conducted in-depth interviews with a sample of licensed registered nurses and physicians across the country designed to ensure representation across a spectrum of self-identified disabilities/chronic conditions.23 We purposefully sought to interview participants across prespecified characteristics, primarily focused on including participants who had a range of diagnoses (grouped broadly as musculoskeletal or sensorineural and progressive or stable); we also purposefully sought a balance between participants with diagnoses preceding their professional training and participants who were diagnosed post training. We located potential participants using advertisements in several nursing and medical regional newsletters and referrals from leaders of relevant professional organizations. Using the snowball sampling technique, we asked study participants to identify other potential participants and provide them with contact information for the research team for follow-up if they were interested in participating.24 Of note, numerous registered nurses contacted the research team expressing a desire to participate; we did not include the vast majority of these potential participants in our study because their participation would not help us achieve the purposeful criteria goals specified in our sampling approach. Conversely, it was particularly difficult to locate eligible physicians, and relatively few responded to our general study advertisements. We determined our final sample size of 10 registered nurses and 10 physicians by thematic saturation, or the point at which no new ideas emerged from successive interviews.25 The research protocol was reviewed and granted exemption by the human investigation committee of the Yale University School of Medicine, and we obtained verbal informed consent from all participants.
Data collection and analysis
Health care role-concordant interviews were conducted in person or over the telephone by two of the coauthors trained in qualitative interviewing techniques (S.B.H., a practicing registered nurse, interviewed all registered nurse participants; R.S., a practicing physician, interviewed all physician participants). Interviews lasted an average of 45 minutes, were facilitated by a standard interview guide (List 1), and were audiotaped, professionally transcribed, and reviewed by the interviewer for accuracy prior to analysis.26
The core coding team (L.N.B., S.B.H., R.S., M.N.S.) read and coded all of the transcripts. They created code definitions as concepts emerged. Each member of the team independently coded transcripts line-by-line, meeting regularly to resolve discrepancies and review the code structure.27 A registered nurse and a physician, each self-identified as having a disability, read and coded all of the registered nurse transcripts and physician transcripts, respectively. The research team was diverse across academic disciplines, racial/ethnic self-identification, age, clinical work settings, and health care professional roles. We used the constant comparative method to compare coded segments of text to expand existing themes and identify new themes.26,27 Codes were refined until we reached a final coding structure capturing the major concepts in the data that we then applied to all of the transcripts. An internationally recognized expert in the field (L.I.I.) reviewed the summary of the findings to provide additional insights. The full research team met in person and electronically to discuss and generate emerging themes after the coding process was completed. As a final step of data verification, we contacted participants and asked them to review the summary of the primary themes and supportive illustrative quotations from their specific interviews; we asked participants to endorse or amend our findings. We engaged all study participants in this process, and none negated or revised any of our findings.27
We interviewed a total of 10 registered nurses and 10 physicians. Seven of the nurses were female; six of the physicians were male. Participants ranged in age from 30 to 80 years old and had completed their basic professional training from 1 to 40 years before the interview. All of the physicians and half of the nurses were actively practicing at the time of the study. The range of disabilities/chronic conditions reported by participants included sensory impairments, progressive degenerative neuromuscular conditions, chronic cardiopulmonary or cerebrovascular diseases, and pain syndromes. Represented work settings included inpatient acute care hospitals, outpatient clinics and private practice settings, academic medicine, extended care facilities, and independent consulting.
We identified five core themes through our analysis of the interview data and provide quotations to illustrate each below and in Table 1. Although participants commented on some of the cultural differences between the professions of nursing and medicine, they overwhelmingly described similar professional experiences attributed to working with a permanent, self-identified physical and/or sensory disability.
Living and working with a physical/sensory disability narrows the career choices and trajectories of nurses and physicians
Physician and registered nurse participants reported commonly making job choices and career transitions in response to how they had been treated, or anticipated they would be treated, because of their disabilities. If the participant was diagnosed before starting medical or nursing school, the process of selecting a specialty was consciously influenced by his or her diagnosis. For physicians, this process was manifested often through the initial choice of medical specialty, although participants sometimes felt coerced into these career decisions.
Once on a professional track, these nurses and physicians frequently changed settings, specialties, or jobs because they felt that they were unable to continue in their current jobs or they were encouraged by others to leave. Although many participants found it necessary to change their career positions for medical reasons, participants consistently expressed being held to a different standard than their peers and often felt pressured to prove themselves capable of their jobs. Participants often felt colleagues were skeptical of their sometimes nontraditional approaches to work tasks, such as sitting instead of standing for procedures and using communication assistance materials like dry erase boards. One physician described the negative reaction he received from colleagues for sitting to complete procedures:
There were some people who were probably a little closed-minded, like if you want to do procedures in an atypical way, [colleagues would think] you probably shouldn't be doing them just because it's different.… And there was also some concern that maybe this isn't going to be adequate, maybe this isn't going to work or will be dangerous. So it was really a gray area; with some people, [it] is closed-mindedness, but with others it was really concern [about safety].
This physician opted to discontinue doing procedures despite never having had adverse complications or patient complaints.
When confronted with disability-related difficulties at work, participants rarely sought recourse from their institutions or outside agencies. Instead, they typically tried to compensate or overcompensate for their disabilities by obtaining extra training to make themselves more marketable, finding creative solutions for carrying out the type of work that they wanted to do, finding ways to control the pain that was preventing them from doing their work, avoiding certain situations so as to hide their disabilities, or changing positions or institutions.
Nurses and physicians struggle with decisions regarding whether to disclose and discuss their disabilities at work
Many study participants described hiding their disabilities for fear of not getting hired or out of fear that patients, peers, and supervisors would treat them differently. Some participants would forego assistive devices for this reason. According to one nurse: “[P]eople immediately see you walking with a cane. It's all subjective but you know what they're thinking—She can't perform her duties or get there in a timely manner.” Deciding whether or not to disclose the existence of a disability to patients seemed to weigh heavily on both physicians and nurses. Another nurse stated, “I don't wanna try an[d] hide it because I don't want people to think that I do have a problem with anything.” A physician stated: “As for the patients … the patients were really unaware of my illness … and are unaware of it. And like many illnesses, you want to look at another person and assume that they're healthy and really you have no idea.”
When patients were aware of their provider's chronic condition, the majority of participants found that patients were generally supportive and also felt that having a disability made them more empathetic in their role as a nurse or physician. Interestingly, participants were more comfortable disclosing their diagnoses to patients than to supervisors and colleagues.
Nurses and physicians with nonvisible disabilities generally described being able to “pass for normal” as an advantage, compared with peers with visible disabilities. One physician stated:
I am very happy … my coworkers have no idea that I have any health conditions at all. And I work on a limited basis and it's a nonissue. Before, when people were aware, my coworkers were aware about the illness, it was more difficult. There was a lot less understanding, and there was a lot of impatience.
However, having a nonvisible disability was sometimes a disadvantage; for instance, when participants were unable to perform a work-related task because of their disabilities, they were uncertain whether or not to disclose their conditions. They often felt embarrassment and fear that the severity of their disabilities would be judged and that others would make false assumptions about what they could and could not do.
Whether the disability was visible or nonvisible, participants worried that colleagues held preconceived notions associated with specific diagnoses that were skewed because of their own experiences caring for patients with the same diagnoses. Participants worried that colleagues would either think they were more disabled or more functional than they were on the basis of their own clinical experience and expertise. This concern sometimes translated into an eagerness on the part of participants to raise awareness regarding disabilities in an effort to limit misconceptions and discrimination in the workplace. However, physician and nurse participants differed in their view on how to raise awareness. Interestingly, most nurses wanted to directly raise awareness through formal and informal presentations to their colleagues, whereas many physicians were less willing to be the “face of disability” in the workplace and wanted others to take the lead on peer educational programming. Overall, participants agreed that the majority of difficulties at work were the result of limited awareness on the part of colleagues. One nurse said, “And I even said one time to one of my fellow nurses, ‘walk in my shoes for a week because then you'd understand.’”
Nurses and physicians rarely seek legally guaranteed workplace accommodations, instead viewing patient safety as a personal responsibility
Overwhelmingly, nurse and physician participants took full responsibility to guarantee accommodations relative to patient safety rather than viewing it as shared responsibility with colleagues and employers. Safety was a primary concern for both nurses and physicians with disabilities, and they described going “above and beyond” to ensure that patient care was never compromised because of their conditions. However, most participants either created their own accommodations or dealt with a less-than-ideal work environment.
Participants commonly felt that they would be seen as “trouble makers” at work if they requested accommodations or commented on other work conditions. This desire to be seen as “ideal” workers was manifested in several ways. Nurses and physicians described working despite feeling sick because of pressure to do so. One physician reported: “They ask[ed] ‘you had another sick day?’ … I think that doctors, myself included, tend not to take sick days, they try to work through days even when they are sick, but at a certain point, or given the severity of an illness, it's just not possible to do that.”
In addition to not using sick days or asking for decreased workloads, participants often independently assumed the cost and task of creating accommodations without “burdening” their employers or other colleagues. Few participants described requesting accommodations from administrators; participants who had approached employers were often met with resistance. One physician expressed the common idea that accommodation requests often negatively affected relationships with administrators at work: “But the perception shifted.… I'm talking about work that I did for 18 years that was highly regarded and then I became this difficult employee within a period of months.” Across the sample, participants did not seek advice, assistance, or redress to assist them in their accommodation-related interactions with administrators.
Interpersonal interactions often reflect the institutional climate and set the tone for how welcome nurses and physicians feel at work
The influence of administrators and supervisors, whether positive or negative, significantly affected how participants viewed their work environments. The culture of the organization, often reflected in the attitudes and behaviors of supervisors and peers, was critical for success or failure at work.
Participants expressed appreciation for those colleagues and supervisors who did try to accommodate them and from whom they felt support. One physician mentioned requesting changes to the on-call schedule because fatigue did not allow him to take calls at night. He presented his idea and reported that his colleagues “were supportive.” Still another mentioned having a supervisor “who was very, very supportive and understanding.”
However, participants more commonly described interactions suggestive of unwelcoming work environments. One physician said: “It was my distinct impression that there was a stigma associated with this. Then a few of my colleagues were very, very thoughtful and understanding, and there were a few others who behaved very badly.” Another physician commented:
There's always going to be a range of opinions on these things. And to be honest, some of them [are] legitimate concerns and some of them [are] people just not being that open-minded, not accepting something that's a little bit different.
Reactions to workplace disability-related challenges run an emotional spectrum from anger and grief to resilience and optimism
Participants expressed a range of responses to changes in their career trajectories that were a result of deteriorating functional abilities or a hostile work environment. The grieving process was layered and centered around multiple losses including: the physical ability to work in their preferred roles, the compensation that they had received or would have liked to receive, contact with colleagues or patients, achieving seniority, or sustained intellectual stimulation. Having to compromise and/or perform in a way that underused their skills made participants feel further marginalized because of their diagnoses. One physician commented, “There's something about a physician dealing with a physical impairment, physical disabilities, they are supposed to be perfect.”
Most participants tried to maintain their own self-confidence despite feeling undervalued by others. Despite expressions of anger, frustration, disappointment, and rejection, participants were strikingly resilient and had a high tolerance for compromise and negotiation at work.
Some participants verbalized that having a disability changed their professional lives in positive ways. One physician described how he retired early because of the disability but that having a disability encouraged him to participate in volunteer work that helps people with disabilities. Another physician described how much he learned about disability in general that could help his patients: “like … knowing where to refer people for certain things or for support services or how to get a wheelchair, parking pass or little things like that that my colleagues would have absolutely no idea [about].”
One physician discussed changing specialty areas because of the disability: “I think it turned out to be a very good decision, because not only did it help me to another path, but it really educated me in other ways.”
Although some positive perspectives and experiences can arise from practicing with a disability, negative feelings and experiences often prevailed. One physician stated, “There was clear disappointment that I was not able to do what I had previously done.”
Regardless, participants did not express a desire to retaliate against their hostile work environments through legal or other measures. Still, they often felt forgotten or invisible within their professions. One physician, who felt that she had been pushed out of her chosen specialty because colleagues were uncomfortable with her disability, noted:
This has been a very tough and lonely road.… And, um, so, I've done everything I could to take, a very negative experience and make it a positive. And, I've been successful, I think, at doing that. You know, and then when it's all said and done, you know, it's either you cry and say you can't or you move on—and I need to put money in my pocket. So, you know, I have to, you know, just say, ‘fine;’ I don't want to say fine to what you want, but, I have to.
This study explored the perceptions and experiences of registered nurses and physicians with self-identified disabilities or chronic conditions associated with functional limitations. Key areas of consensus emerged from our data despite the differences in culture and training among these nurses and physicians. Across participants, practicing with a disability universally affected career choices and trajectories. In most instances, participants recounted negative and isolating experiences. Other thematic findings spanned a broad spectrum of emotional responses. Some physicians and nurses became angry because they felt like they were being treated as less than fully competent because of their diagnoses. As a result, many exited their jobs or positions and grieved those losses. Still, many participants described resilience because they had experienced the struggles of “proving” their competence despite their disabilities. Several participants described a process of becoming optimistic despite all of the challenges as they explored new pathways and career transitions.
Many of our findings were consistent with previously published articles.7,21,28–30 Our systematic inquiry uniquely characterized these shared perspectives across a diverse sample of health care professionals and also revealed novel, common experiences. Notably, our participants typically described work environments in which they were independently making decisions about workplace safety. They constantly examined and reassessed how their diagnoses might negatively affect patient care; they proactively, and usually without input or support, implemented solutions or removed themselves from potentially unsafe situations or tasks. Furthermore, participants were reluctant to request workplace accommodations or to seek assistance in developing or financing solutions that would allow them to remain in their positions more safely and for longer. We were especially struck by this finding as the participants seemed either unaware of the legal protections in the workplace for employees with disabilities or fearful of pursuing this option. Although this reticence is not unique to physicians and nurses, it is nevertheless striking and unexpected.
The implications of our study are manifold. Health care organizations have the opportunity to institute changes that can promote the retention of qualified and needed physicians and nurses while demonstrating to patients and the community-at-large that people with disabilities are a diverse group who are valued by the organization for the important contributions that they make and for the critical perspectives that they bring. Employee turnover is costly to the institution,31,32 and projected workforce shortages suggest a dire need to retain our existing health care workforce.33 Prior work with registered nurses with disabilities found that they often leave the profession for reasons related to their disabilities,4 and half of the nurses in our study were unemployed at the time of our interview. It is unknown how many physicians leave the profession for a disability-related reason.
On the basis of our findings, the necessary accommodations for nurses and physicians with disabilities can often be made without major structural changes to the work setting. Examples of suggested changes include special listening devices on phones for deaf or hearing impaired staff, additional lighting in spaces where writing takes place, and ramps instead of stairs in strategic locations. Many of these accommodations are already mandated by the Americans with Disabilities Act (ADA), the 20th anniversary of which was recently observed.34–38 Adjustments in shift schedules for practitioners who are easily fatigued and creative adaptations to conducting procedures can be reviewed and implemented. One article provides extensive recommendations to improve access for academic faculty with disabilities,17 and another offers suggestions for employing and retaining nurses with disabilities.9 Both discuss physical and nonphysical work barriers to health care workers with disabilities and reasonable changes to accommodate their needs.
In addition, raising awareness is widely needed. Formal and informal training of staff may be an important first step. Major accreditation and professional bodies currently lack requirements and guidelines for such training; organizational guidance for how to successfully adhere to the spirit and the letter of the ADA might be a productive next step. Within both nursing and medicine, steps toward recognizing that health care professionals with disabilities contribute critical thinking skills and intellectual ability to their work will be key.
Our work extends a narrow literature on health professionals with disabilities. We achieved our purposive sampling goals, yet we recognize that our findings may not be generalizable to other populations. We also focused exclusively on the lived experiences of participants; that is, we did not seek to independently verify the experiences that they described. This self-report approach best captures the perspectives of participants, which was our study's objective. It is important to note that because this population was difficult to find and access, participants were self-selected. We realize that individuals with experiences at the extremes might have been the only ones to answer our invitations. We also recognize that half of our sample of registered nurses were not currently practicing at the time of interview in contrast to physician participants, of whom all were actively practicing. We anticipated this pattern and think that including the perspectives of health care professionals who have temporarily or permanently exited the workforce strengthens the quality of our data. Their perceptions are a valid representation of how they interpreted and responded to their professional experiences, and these perspectives are valuable to include in any process of organizational and structural change. The validity of our findings rests on the diversity of the sample, thematic saturation across the sample, the breadth of the research team, the rigor in our data collection and analysis, and participant verification of the presented themes.
Physicians and registered nurses who self-identify as practicing with a disability experience similar challenges in the health care workplace. Organizations should be poised to support diversity among health care professionals by creating supportive environments for employees to seek accommodations and practice safely. Health care practitioners with disabilities might also benefit from formal and informal support networks as they navigate isolation at work and invisibility within the profession. Our findings suggest that health care organizations and professional schools may need to play a proactive role in educating all health care professionals, both those with and those without self-identified disabilities, regarding ADA mandates in addition to establishing procedures for requesting accommodations while preserving privacy and confidentiality. Although additional research is needed to provide quantitative data and much can be learned from further qualitative analyses, the work presented here provides an opportunity for local and national leadership to prioritize this issue in the workplace. There is no debate that patient safety is paramount, and dialogue centered on legitimate versus misguided concerns is needed to avoid the default of excluding persons with disabilities from practice or sustaining an unsafe workplace for those providers. Creating a workplace that is welcoming for nurses and physicians with disabilities should also be a key priority, particularly as we face marked provider shortages.
The authors thank Susie Pratt for her assistance in analyzing the data and Sylvana Hidalgo for providing research assistance. They both received financial compensation for their assistance.
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This study was supported by grants from Sigma Theta Tau Delta Mu Chapter (PI: L.N.B.) and from the Association of American Medical Colleges Nickens Faculty Fellowship (PI: M.N.S.).
This protocol was reviewed by the Yale University School of Medicine human investigations committee and granted exemption.
A preliminary summary of these findings was presented as an oral scientific abstract at the sixth Annual Meeting of the Association of American Medical Colleges Physician Workforce Research Conference (May 6–7, 2010, Alexandria, Virginia).