“Disability is a universal aspect of human experience, affecting nearly everyone at some point in his or her life span.”
–Kirschner & Curry, 2009
In 2009, in a commentary published in the Journal of the American Medical Association, Kirschner and Curry stated what should be obvious to all of us: Disability is a universal aspect of human experience, and it will affect all of us, either directly or indirectly, at some point in our lives. Despite its universality and the inevitable encounters with disability that nurses and other healthcare professionals will have—personally and as part of their role as health professionals—the health professions’ educational programs do not adequately prepare students to provide quality care to individuals with disability.
Those with disability—be it mild and a mere inconvenience, or one that necessitates the use of high-tech support for survival—have repeatedly reported that their healthcare needs are not adequately addressed by healthcare providers. Most healthcare professionals, including nurses, are unfamiliar with the consequences of disabling conditions in the lives of individuals with disability. They lack knowledge about how to communicate effectively with those with all types of disability, do not consider the effect of individuals’ disability on their ability to participate in health-promotion efforts, harbor negative attitudes and bias toward them, stereotype them, and often perceive them as unable (or unwilling) to take an active part in their own care.
Healthcare professionals have reported that disability is not a very important issue, despite the statistics that indicate that people with disability comprise the largest minority group in the US. Some healthcare providers have indicated that they are unlikely to be in roles or settings in which they will care for individuals with disability, when in fact, based on the large and growing number of people with disability and their need and desire for healthcare, they are very likely to encounter individuals with disability in their practice.
Many healthcare professionals recognize and acknowledge that they lack knowledge, expertise, and experience to provide quality care for this population, despite years of education to prepare them to provide quality healthcare to diverse populations. Because of this lack of knowledge and expertise on the part of healthcare professionals across healthcare settings, communication and interaction of healthcare providers with individuals with disability, and the health-care they receive, remain very problematic.
Ineffective communication on the part of healthcare professionals when interacting with individuals with disability has broad implications and repercussions. Healthcare providers who believe they know best, and are the experts on disability (despite their acknowledged lack of expertise on the topic), will continue to ignore the wishes and preferences of individuals with disability and their desire to make decisions about their own lives and healthcare. Many healthcare professionals presume people with disability are reluctant to participate in health promotion. Many healthcare professionals are unaware of barriers to accessible healthcare and screening experienced by individuals with disability, and as a result are unable to identify ways to address or overcome those barriers. Healthcare professionals who do not understand disability and the contributions that those with disability make to their families, to the lives of others, and to society as a whole, may consider preventive health screening and health promotion efforts to be not worth the effort for someone who already has a disability.
Individuals with disability have reported that healthcare providers are uncomfortable and unwilling to discuss issues related to sex and sexuality with them. They have further reported that healthcare providers assume that they are uninterested (or perhaps believe that they should be uninterested) in sexual relationships, intimacy, pregnancy, and childbearing. Women with disability who have elected to become mothers and have sought out prenatal care have reported that their healthcare providers’ first assumption was that the reason for their healthcare visit was to terminate their pregnancy, even if the pregnancy was well-thought-out and planned. Women with disability who have successfully become pregnant have been questioned and chastised by healthcare professionals about their decision to bear children, and have even been blatantly accused of being irresponsible for becoming pregnant and having children. Women with disability have expressed fear that someone will attempt to remove their children from them based solely on their having a disability, regardless of how well they have cared for their children and been very successful and effective parents.
Most studies that have addressed the healthcare experiences of individuals with disability have focused on their interactions with physicians. However, studies of nurses indicate that nurses’ attitudes and knowledge level mirror those of physicians and reflect those of greater society. Numerous national and global organizations and agencies have issued calls for the healthcare disciplines to address the inadequate healthcare experienced by individuals with disability; these agencies and organizations have identified changing the educational preparation of healthcare professionals as a primary strategy and an important first step.
Several organizations, with input from individuals with disability, have developed competencies that should be expected of all healthcare professionals who interact with individuals with disability. The Alliance for Disability in Health Care Education has urged nursing, medicine, and other healthcare professions to endorse these competencies with the goal of moving forward in the effort to improve the healthcare of individuals with disability. Nurses have been very involved in the development of these competencies from the beginning of the process. Several nursing organizations, including Sigma, have endorsed the cross-discipline competencies developed by the Alliance for Disability in Health Care Education (2019).
Throughout this book, the authors use the term people with disability rather than people with disabilities. The singular disability is used as a collective noun to note commonalities rather than differences among individuals with different types of disability or groups of individuals with disability. The term disabilities has been avoided because it suggests differences and fragmentation rather than the similarities that this book is intended to address (McDermott & Turk, 2014).
This book is based on the principle and belief that all healthcare professionals—regardless of discipline, level of education, or role within the healthcare system—have a role in caring for individuals with disability. As such, they need a basic understanding of the issue of disability to provide appropriate, optimal, and sensitive health-care to those with disability. These issues and more are addressed in the chapters of this book. It is intended to provide information to nurses, nursing students, and other healthcare professionals to enable them to communicate with and provide quality healthcare to individuals with disability.
The first three chapters of this book provide essential background information intended to put the topic of disability in context. Often, disability is not the reason that an individual with a disability seeks healthcare. However, the presence of a disability often has a negative effect on the individual’s interaction with healthcare clinicians. The goal of this book’s first three chapters is to provide background to ensure that interactions with those with disability are positive and of high quality. The first three chapters also provide definitions of important terms and an explanation of what terms are considered acceptable by individuals with disability and their community.
Key information addressed in Chapter 1 includes the epidemiology of disability and an explanation of the major categories of disability. This illustrates that types of disability have been categorized in many ways over time, and some terms have been discarded as objectionable.
Chapter 2 discusses the social determinants of health. These can have a very significant impact on how individuals with disability are perceived and are treated within the healthcare system. A historical view of models of disability and the role of these models in framing the views of healthcare professionals and the broader society are also discussed. In addition, an important distinction is made between “disability” and “disabling condition.” Nurses and other healthcare professionals can be very knowledgeable about a disabling condition without considering the day-to-day experience of individuals with disability as they try to navigate a healthcare system that frequently throws barriers in their way to obtaining care. To put today’s approaches to disability in historical perspective, a brief history of disability through the ages is included. Finally, strategies for communicating with individuals with various types of disability are discussed.
Chapter 3 introduces barriers to access to healthcare for individuals with disability. These have been identified by multiple agencies, researchers, and individuals with disability and their advocates. Specific categories of barriers are addressed, along with the consequences of those barriers on access to healthcare. Strategies to address these barriers are suggested. Important federal legislation related to the rights of individuals with disability is also addressed.
Each of the next five chapters discusses a major category of disability. This is to provide nursing students and nurses in practice with the necessary background to communicate with and care for individuals with that disability. Each chapter provides information about the disability category; appropriate terminology; and information about the prevalence, causes, and consequences of disabilities in that category. They also provide examples of specific disabling conditions within the category of disability, along with specific points about caring for individuals with disabilities in that category. Finally, each chapter includes links to informative and helpful resources. It is not the author’s intention to make readers experts or specialists in disability. Rather, it is to arm them with information that will enable them to provide high-quality and sensitive care to individuals with disability they see in their practice across various settings. These include but are not limited to outpatient settings, acute and long-term care facilities, maternity settings, and home- and community-based settings.
The last chapter of the book, Chapter 9, addresses the inclusion of individuals with disability in nursing education. The discussion is based in part on the principle that nursing care—and, more generally, healthcare—could be improved and made more accessible, more welcoming, and more effective for individuals with disability if healthcare providers knew about disability from their own personal experience and perspective. Hopefully, the information included in this chapter will result in more open, welcoming, and supportive admission policies to enable individuals with disability to become nurses and other healthcare professionals and to improve the health and nursing care of this population in the future.
This book is based on the principle and belief that all healthcare providers have a role in caring for people with disability and need a basic understanding of the issue of disability to provide appropriate, optimal, and sensitive healthcare to those with disability. The hope is that this book will serve as a starting point for nursing students, nurses in practice, nursing faculty, and others interested in the topic of disability to consider the healthcare issues experienced by individuals with disability, at least in part because of barriers to quality care. I want the nursing discipline in general and nurses in particular to take the lead in addressing the needs of people with disability in our care. Nursing and nurses must become the solution, rather than part of the problem, for individuals with disability seeking health-care.
COVID-19 AND PEOPLE WITH DISABILITY
This book was written in part during the worldwide coronavirus (Covid-19) pandemic that surged in 2020. The pandemic raised important issues for individuals with disability, their families, and other support persons, as well as for nurses and other healthcare providers who provide healthcare to all populations. The Covid-19 pandemic has affected individuals with disability more than many other populations.
In the best of circumstances—that is, in the absence of a pandemic like Covid-19—people with disability experience healthcare inequities. They have a difficult time obtaining the kind of health-care they need and deserve. Some healthcare providers fail to recognize the desire and ability of individuals with disability to have a say in what happens to them when they seek healthcare and do not treat individuals with disability with the dignity and respect they deserve. Although the Americans with Disabilities Act was passed more than 30 years ago, in 1990, many changes and policies are still needed to ensure that healthcare for this population is available, accessible, respectful, and sensitive to their needs.
The Covid-19 pandemic uncovered even more issues that need to be addressed. One of these is that in many cases, people with disability are at increased risk for Covid-19 infection because of preexisting health conditions—often multiple health conditions. Some of these preexisting conditions put people with disability at high risk in ordinary circumstances because many have what could be considered a narrow margin of safety or health. Although disability cannot and should not be equated with poor health, this narrow margin of safety may make it more likely that someone with disability will experience health issues earlier or more easily than others. For example, if someone has a high spinal cord injury, that person’s respiratory status may be good in normal circumstances, enabling him or her to breathe without difficulty. But if that individual has a simple respiratory infection (or cold), his or her respiratory status may become compromised more easily. Then, when the severe respiratory symptoms that often occur with Covid-19 develop, the likelihood of severe respiratory failure increases dramatically.
The Covid-19 pandemic has created other problems for people with disability. For example, during the pandemic, people with disability have been justifiably concerned that they might not be seen as deserving of hospitalization and ICU care, including treatment with ventilators, if needed. The pandemic has also made it increasingly more difficult for individuals with disability to obtain other treatments they might need, as well as food, medication, and other products required to maintain their well-being.
The ability of individuals with mobility limitations to wash their hands may be reduced. Although hand sanitizers can be used in these situations, the limited supply or availability of such sanitizers may prevent individuals with disability from using them as often as recommended. Further, handwashing with soap and water is preferable and more effective than using hand sanitizers.
During the Covid-19 pandemic, some healthcare facilities established policies prohibiting family members or other support persons from staying with patients during hospitalization in an effort to decrease the risk of virus transmission. This was devastating for many individuals who required hospitalization, including those with disability—particularly for those with intellectual or cognitive disability and those who have difficulty communicating with healthcare team members. These individuals often require additional time to communicate and frequently rely on family members or support persons to assist them. Family members or support persons are also often needed to minimize the stress and anxiety that arises in hectic or chaotic situations, such as acute care or emergency room visits.
The pandemic has also affected people with hearing loss because of the need for healthcare providers—and everyone else—to wear masks. Masks prevent people with hearing loss who rely on facial expressions and lip/speech reading from understanding what others are saying. When wearing a mask, healthcare providers must use new strategies to communicate with people with hearing loss.
The effects of Covid-19 in nursing homes and other long-term care facilities during the pandemic have been tragic and distressing. The pandemic has placed individuals with disability who live in nursing homes or long-term facilities at increased risk due to their close proximity with others and an inability to maintain social distancing. Employees in nursing homes and other long-term care facilities—which are often understaffed—are also at increased risk for infection. This is due to their own health issues, a lack of personal resources, the fact that many of them are underserved in their own communities, a lack of personal protective equipment (PPE), and the frequency with which they provide close physical care to residents. Moreover, many staff members use public transportation to get to their jobs, increasing their exposure to people who may be infected. All these factors contribute to the risk of transmission of Covid-19 to both residents and caregivers, resulting in the tragic events that have occurred in nursing homes and long-term care facilities nationwide.
The lack of preparation for the Covid-19 pandemic in 2020 has taken many people and organizations by surprise. Going forward, analyses of what went wrong and what can be done to prevent the recurrence of the devastation experienced in nursing homes and long-term care facilities, and by society as a whole, are crucial. As a country and as healthcare professionals, we must recognize that pandemics are possible and prepare for them accordingly. We must also ensure that organizations such as the Centers for Disease Control and Prevention and healthcare departments across the country have the resources they need to conduct appropriate surveillance and to develop evidence-based policies needed to contain pandemics. Simply put, we must have a coordinated response within healthcare and across the country.
K. L., Curry,
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