Just and Realistic Expectations for Persons with Disabilities Practicing Nursing, Oct 16 – AMA Journal of Ethics

The nursing profession can become more inclusive by fostering a supportive culture, resilience, and realistic expectations for people with disabilities. AMA Journal of Ethics is a monthly bioethics journal published by the American Medical Association.

Source: Just and Realistic Expectations for Persons with Disabilities Practicing Nursing, Oct 16 – AMA Journal of Ethics

Patricia M. Davidson, PhD, RN, Cynda Hylton Rushton, PhD, RN, Jennifer Dotzenrod, MPP, Christina A. Godack, MA, Deborah Baker, DNP, CRNP, and Marie N. Nolan, PhD, RN

Abstract

The Americans with Disabilities Act prohibits discrimination on the basis of disability and requires schools to provide reasonable accommodations for persons with disabilities. The profession of nursing is striving for diversity and inclusion, but barriers still exist to realizing accommodations for people with disabilities. Promoting disclosure, a supportive and enabling environment, resilience, and realistic expectations are important considerations if we are to include among our ranks health professionals who can understand, based on similar life experiences of disability, a fuller range of perspectives of the patients we care for.


Introduction

The Americans with Disabilities Act (ADA) of 1990 provides civil rights protections to persons with disabilities similar to those provided on the basis of race, sex, national origin, and religion. More specifically, “the ADA prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications” [1]. The ADA Amendments Act (ADAAA) of 2008 clarifies that the ADA’s definition of disability was to “be construed in favor of broad coverage of individuals … to the maximum extent permitted by the terms of this Act” [2]. The ADA also mandates that employers provide reasonable accommodations to qualified employees with disabilities, unless providing such accommodations would result in “undue hardship” or “significant difficulty or expense incurred by a covered entity” [3]. Reasonable accommodation refers to assistance or changes to a position or workplace that will enable a person to undertake occupational tasks despite having a disability [1]. Schools of nursing are thus legally bound to provide reasonable accommodations to students, faculty, and staff.

In our experience, there is broad support for this goal within the nursing profession. The National Organization of Nurses with Disabilities (NOND), for example, advocates for an inclusive workplace culture and provides both a voice for disability and resources to promote inclusion through professional engagement and demonstration of financial need [4]. Indeed, the nursing profession is striving for diversity through federal stipends and scholarship programs [5] and promotion of dialogue on the topic [6]. Nevertheless, more than 25 years after the passage of the ADA, there remain challenges in operationalizing the rights and responsibilities of students, nurses, and nursing faculty and administrators [7, 8]. In this article, we illuminate barriers to accommodations in the nursing profession and suggest how the culture of nursing can be made more inclusive of people with disabilities. To do so, we draw on a social model of disability that focuses attention on intentional or unconscious systemic barriers, negative attitudes, and prejudicial actions [2, 9, 10].

Challenges in Implementing Accommodations in Nursing

There are four major barriers to implementing accommodations for persons with disabilities in nursing: the heterogeneity of practice settings; stereotypical views about the capabilities required to deliver safe care; clinician and patient expectations; and a professional environment where providing accommodations can be challenging.

Capacities needed for nursing care. There has been little research on which physical and mental capacities are essential for delivering safe nursing care, and, in some cases, there is a mismatch between the academy and the health system [11, 12]. The commonly applied technical standard of being able to stand for 12 hours, for example, is likely not relevant for someone wanting to work in a community or telehealth setting and is particularly fraught due to failure by nursing as a profession to address potential harmful consequences suffered by nurses who work 12-hour shifts [13]. It is possible to determine which skills and abilities are needed to administer medications, start intravenous infusions, and manage 3-10 patients by assessing patients’ needs and prioritizing specific care tasks. Schools of nursing in academic health centers could be ideal settings to build interdisciplinary research teams to study such questions. Colleagues in biomedical engineering could measure gross and fine motor skills needed for nurses to complete certain tasks. Neuroscientists and cognitive psychologists could determine the scope of attention, memory, response time, and decision-making abilities needed from nurses working in particular settings. Teams could also develop technologies, such as smart phone applications that calculate doses and warn of medication contraindications, to enhance nurses’ abilities or develop possible accommodations for nurses with disabilities in any of these areas. Although these are suggestions for future research, it is now possible to test professionals’ functional capacities without identifying which ones are essential. Nurses and other team members in acute and critical care settings regularly practice resuscitation simulations of respiratory and cardiac arrest and even practice responding to mass casualty events with triage and coordination for treatment for large numbers of people. Notably, however, with the exception of recertification for cardiopulmonary resuscitation, in most cases, what’s assessed is team rather than individual functioning.

Culture of nursing. Despite the protection provided by the ADA, many health care professionals, including nurses, physicians, and physician assistants, are reluctant to request access to resources and accommodations since they fear stigmatization and reprisals, such as exclusion from opportunities [14]. Reprisals can be sources of harm not only to individual health professionals but also to the patients, families, and communities those professionals serve. Many workplace injuries likely occur because employees do not seek assistance and are unwilling to disclose physical or psychological limitations that can place patients at risk. Promoting a health care workplace culture that is supportive, accommodating, and compliant with the ADA is critical for ensuring safety for everyone in health care environments. Moreover, as the nursing workforce ages, many employees will suffer from chronic and complex conditions and likely need accommodations [15]. For example, nurses have a high prevalence of disabilities from musculoskeletal disorders [16].

Changing the Culture of Nursing to Support People with Disabilities

Students with disabilities and health care professionals who acquire a disability through accidents or aging face many challenges but also opportunities [9, 10]. Promoting a culture of open communication, compassion, ADA compliance, safety in disclosure of physical and psychological limitations, and support is critical to the health of individual health professionals and patients [17]. Below we discuss ways in which institutions and individuals can promote a culture of inclusiveness in their workplaces.

Foster resilience in persons with disabilities. Commonly, people with disabilities have already faced many challenges before they reach nursing schools, and we have much to learn from them in improving patient care and personal resilience. Kay Redfield Jamison, professor of psychiatry at Johns Hopkins School of Medicine, exemplifies resilience in the face of challenges. In writing about her own experience with bipolar disorder, she has demonstrated that a physician can not only manage this illness but also flourish as an international expert who has shattered stereotypes that limit career aspirations of those with similar illnesses [18]. Providing such persons with mentorship, awareness of their rights and resources, and strategies for promoting resilience are important for their success and happiness in the workplace [19].

Foster meaningful engagement. Discussions of disability and illness are often shrouded in fear, prejudice, stigma, and inappropriate use of power [20-22]. Fear of the unknown, litigation, and failure can all conspire to create less meaningful and inclusive work environments. We believe that these fears can be overcome by effective communication and engagement with disability experts—and, importantly—with people with disabilities [5]. For example, close communication between nursing schools and health systems can help to forge realistic expectations about career opportunities and appropriate practice settings. Acceptance of diversity and disability requires not only good communication but also that each of us appraise our own values and beliefs in the context of how we understand professionalism and norms of respect, which are needed to create cultures of ethical practice [23].

Work with students with disabilities. Promoting environments that enable academic success, professional satisfaction, and achievement of career aspirations should be important goals of student admissions and academic services. Less clearly stated, but likely more important than providing accommodations, is providing students with realistic expectations about work environments and exposure to nursing roles not limited to the bedside, such as those in organizational oversight and administration [24, 25]. By failing to provide students with disabilities with realistic expectations for different health care work environments, health care professionals and organizations neglect their responsibilities as employers and educators [26]. For example, allowing shadowing in a range of career settings can be useful in promoting exposure to and shared understandings of requirements needed for a range of nursing roles. All too often, disability is made invisible and excluded from broader discourse and debate about workforce composition, which should be a key feature of diversity and inclusion conversations [27]. As schools of nursing move toward models of holistic and diverse admission, the focus should be on disability as an opportunity for nursing as a profession [28].

Conclusion

Diversity and inclusion debates about the nursing workforce should accommodate a range of perspectives. The American Nurses Association’s Code of Ethics for Nurses with Interpretative Statements [29] should be our guide in ensuring that we promote quality care within a culture of ethical practice that encompasses not only our patients but also fellow professionals and students. Much cultural work remains to be done beyond writing white papers and issuing policy statements. For example, increasing tolerance and respect for diverse abilities and views of difference are just as important as lists of accommodations and procedures for leveraging cultural change, which is not easy but achievable when professions are committed to person-centered care, equity, diversity, and social justice.


References

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Patricia M. Davidson, PhD, RN, is the dean and a professor of nursing at Johns Hopkins School of Nursing in Baltimore, where she has introduced a new degree program and works to increase diversity of faculty and students and to increase community engagement. A global leader in cardiac health for women and vulnerable populations, Dr. Davidson’s research focuses on supporting persons living with chronic conditions and developing innovative models of transitional care.

Cynda Hylton Rushton, PhD, RN, is the Anne and George L. Bunting Professor of Clinical Ethics at the Berman Institute of Bioethics and the School of Nursing at Johns Hopkins University in Baltimore, where she has a joint appointment in the School of Medicine’s Department of Pediatrics. A founding member of the Berman Institute, Dr. Rushton co-chairs Johns Hopkins Hospital’s Ethics Committee and Consultation Service. She has spent several decades developing innovative policies for student admissions and strategies to promote diversity, inclusion, and student success.

Jennifer Dotzenrod, MPP, is associate dean for enrollment management and student affairs at Johns Hopkins School of Nursing in Baltimore. Over the previous several decades, she has developed innovative policies for student admissions and strategies to promote diversity, inclusion, and student success.

Christina A. Godack, MA, is the chief of staff and dean of marketing and communications at Johns Hopkins School of Nursing in Baltimore. Previously, she served as executive vice president of public relations at Hartt and Company, vice president of public relations at Weber Shandwick, assistant director of news and information at Johns Hopkins University, and account executive with Ogilvy and Mather Public Relations. She is committed to a diverse and dedicated nursing profession.

Deborah Baker, DNP, CRNP, is senior vice president for nursing at the Johns Hopkins Health System in Baltimore, where she also serves as the vice president of nursing and patient care services for the Johns Hopkins Hospital. In addition, she serves as associate dean for clinical affairs and is also a member of the School of Nursing Advisory Board.

Marie N. Nolan, PhD, RN, is executive vice dean and a professor at Johns Hopkins School of Nursing in Baltimore, where she also leads academic affairs and holds a joint faculty appointment in the Johns Hopkins Berman Institute of Bioethics. Widely published in the nursing and multidisciplinary research literature, Dr. Nolan has edited two books, Measuring Patient Outcomes (SAGE Publications, 2000) and Transplantation Nursing: Acute and Long-term Management (Appleton and Lange, 1995). She has also served on advisory panels of the National Institutes of Health regarding end-of-life care research.

Medical Schools’ Willingness to Accommodate Medical Students with Sensory and Physical Disabilities: Ethical Foundations of a Functional Challenge to “Organic” Technical Standards, October 2016

Perspectives on the Meaning of “Disability”, October 2016

Resisting Outdated Models of Pedagogical Domination and Subordination in Health Professions Education, September 2016

Teamwork in Health Care: Maximizing Collective Intelligence via Inclusive Collaboration and Open Communication, September 2016

Workplace Wellness Programs and Accessibility for All, April 2016

The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

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