- Email: [email protected]
Improving the health and wellness of persons with disabilities: A call to action too important for nursing to ignore
Improving the health and wellness of persons with disabilities: A call to action too important for nursing to ignore Suzanne C. Smeltzer, RN, EdD, FAAN
In 2005, the US Surgeon General issued a Call to Action to Improve the Health and Wellness of Persons with Disabilities,1 with the goal being the improvement of the health status of men, women, and children with disabilities. Despite federal legislation to address inequities in health care for the 54 – 60 million people in the US with disabilities,2,3 many have reported negative experiences in their interactions with health care providers from all health professions. Collectively, the nursing profession has been silent in its response to this call. This article describes the current status of health care of individuals with disabilities in the US, and suggests appropriate responses by the nursing profession to the Surgeon General’s Call to Action.1 Specific suggestions are identified for nursing practice, education, research, nursing leaderships, and the profession of nursing as a whole.
I
n July of 2005, the Surgeon General’s Office disseminated the Call to Action to Improve the Health and Wellness of Persons with Disabilities.1 This call to action is too important for the nursing profession to ignore and it strikes too close to the core beliefs and values identified in nursing’s Social Policy Statement4 and Scope and Standards of Practice5 to leave to others. In his foreword to the document, Dr. Richard Carmona, then US Surgeon General, stated that the Call to Action is based on the need to ensure accessible, comprehensive health care for all persons with disabilities so that they are able to have full, engaged, and productive lives in their own communities.1 Accessible facilities, available and appropriate health care, and services that promote health and wellness are major requirements if people with disabilities are to experience the full lives that the Surgeon General identified as a goal for all. Of specific relevance to health care providers, including nurses, Surgeon General Carmona also identified the need for health care professionals to Suzanne C. Smeltzer is a Professor and Director, Center for Nursing Research at Villanova University College of Nursing, Villanova, PA. Reprint requests: Dr. Suzanne C. Smeltzer, Villanova University College of Nursing, 800 Lancaster Avenue, Villanova, PA 19085. E -mail: [email protected] Nurs Outlook 2007;55:189-195. 0029-6554/07/$–see front matter Copyright © 2007 Mosby, Inc. All rights reserved. doi:10.1016/j.outlook.2007.04.001
treat the whole person rather than the disability, and called for educators in the health care professions to teach about disability.1 The Call to Action is based on the principle that good health is necessary if individuals with disabilities are to have the freedom to work, learn, and engage in their families and communities. Surgeon General Carmona called for greater understanding among the public, health care providers, educators, and policy makers about disability and its impact on health status and health care of people with disabilities. In his press conference launching the Call to Action,6 the Surgeon General identified the following 4 specific goals: 1. Increased understanding nationwide that people with disabilities can lead long, healthy, and productive lives. 2. Increased knowledge among health care professionals, and increased availability of tools to screen, diagnose, and treat the whole person with a disability with dignity. 3. Increased awareness among people with disabilities of the steps they can take to develop and maintain a healthy lifestyle. 4. Increased accessible health care and support services to promote independence for people with disabilities. Challenges that need to be addressed to reach the 4 goals and strategies to overcome the challenges are addressed in the Surgeon General’s report. Specifically identified are the many barriers that people with disabilities encounter in their efforts to obtain health care and to participate in school, work, worship, family, and community activities.
DISABILITY: A LARGE AND GROWING ISSUE IN THE UNITED STATES The population of persons in the US with disabilities is estimated to be 54 – 60 million strong,2,3 representing 1 of every 4 or 5 US residents. This number is expected to increase exponentially as the population ages. Many individuals who previously might have succumbed to childhood illnesses and infectious diseases, adults with chronic disorders, and those who have experienced J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
189
Surgeon General’s call to action
Smeltzer
severe trauma are surviving and living well into adulthood and old age.1,7 Recent changes in life expectancy in people with disabilities clearly illustrate this. Since 1983, the life span of persons with Down syndrome has doubled,8,9 while the average life span of a person with cystic fibrosis, which was about 18 in 1985, is now 34 years of age.10 Almost all people with spinal cord injury (SCI) previously experienced very premature mortality because of complications; today, the expected life span is around 70 years of age, only 8 years shorter than that of someone without SCI.11 Developments in managing these and other disabling conditions have increased the number of individuals aging with pre-existing disabilities. As a result, there are growing numbers of children and young, middle-aged, and elderly adults with disabilities, including developmental disabilities. Although disabilities are often perceived as associated only with old age, national data demonstrate that disabilities occur across the life span.12 A common misperception is that most people with disabilities are in ill health, dependent, and incapacitated;1 for some this misperception translates to the belief that most people with disabilities are institutionalized or likely to require institutionalization. The reality is that the overwhelming majority of persons with disabilities reside in and contribute to the communities in which they live.1,3 Disabilities affect people of all age groups, races, ethnic groups, and socioeconomic and education levels. Because it is so diverse, pervasive, and wide-ranging, disability has largely been ignored by the health care professions, including the nursing profession, which have not identified and adopted a unique focus on disability as their own.
between health conditions (ie, diseases, disorders, injuries, trauma, etc.) and contextual factors (ie, personal and environmental factors). Others17 describe disability as a multifaceted, complex experience that is integrated into the lives of persons with disabilities. The degree to which that integration occurs is influenced by 3 disability-related factors: (1) the effects of the disabling condition, (2) others’ perceptions of disability, and (3) the need for, access to, and use of resources by the person with a disability.
DISABILITY VS DISABLING CONDITIONS In contrast to disability, which reflects one’s interaction with the environment, disabling conditions— often referred to as disabilities—are those physical and mental/ psychological disorders that have the potential to cause disability. Although knowledge about conditions and disorders with the potential to cause disability is important for health care providers, knowledge about the vast array of different disabling conditions does not guarantee that one will understand or appreciate the experience of living with a disability or consider the experience of having a disability when providing care.18 Health care providers often focus either on the disability or ignore it entirely instead of considering how disability affects other health issues and how other health issues, in turn, affect disability.1,18 Disabilities (ie, disabling conditions) can be categorized as developmental in nature, acquired due to acute or chronic illness or injury, or age-associated. Disabilities can result in impairment of physical function or mental health, cognition, speech, language, or self-care. They can affect mobility, sensory function (hearing or vision), or the ability to learn, remember, concentrate, or communicate. Disabilities can affect the ability to work, shop, care for oneself, or obtain health care.3 While many disabilities are visible, some cannot be seen by others; these invisible disabilities (eg, cardiac insufficiency, sensory impairment, and some intellectual or cognitive impairments) are often as disabling as those that are visible and obvious to others. Some people can be temporarily disabled because of an injury or acute exacerbation of a chronic disorder and later return to full functioning; many others have disabilities that are stable or relentlessly progressive over time. Disabilities can range from those with relatively mild limitations that necessitate no assistive aids or that can be managed with changes in lifestyle to significant disabilities that necessitate substantial care and advanced technology to enable mobility, self-care, and breathing.1
DEFINITION OF DISABILITY There are many definitions of disability and many types of disabling conditions. While many of the definitions of disability serve different legal, social, and political purposes, there is general agreement that disability is associated with a limitation in a major activity.13 In 1980, the World Health Organization (WHO) defined disability as a limitation in a person’s abilities (eg, mobility, personal care, communication, behavior); impairment as an alteration in body systems (eg, neurological, respiratory, urologic); and handicap as the disadvantages experienced by people in their environment (eg, in the workplace, economic sufficiency, and independence).14,15 In 2001, WHO revised its definitions to change the focus from a classification system based on consequences of disease to one that is focused on components of health.16 In the revised classification system, disability is an umbrella term for impairments, activity limitations, participation restrictions, and environmental factors. Impairment is defined by WHO as a loss or abnormality in body structure or physiological functions, including mental functions. A person’s functioning or disability is viewed as a dynamic interaction 190
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
HEALTH CARE OF PEOPLE WITH DISABILITIES Eliminating disparities in health care for individuals with disabilities was identified as a national objective for the first time in 2000 in Healthy People 2010.12 The Rehabilitation Act of 1973, the American with DisabilO
U T L O O K
Surgeon General’s call to action
ities Act (ADA) of 1990, the Olmstead decision of 1999, and the New Freedom Initiative of 2001 have been enacted in an effort to improve access for people with disabilities to facilities and services, including those related to health care. However, those with disabilities continue to report barriers to accessible health care.1 These barriers are structural, environmental, and attitudinal in nature. Some of the challenges that are not as well-recognized and serve as additional barriers are those resulting from lack of knowledge, awareness, and sensitivity on the part of health care providers. Just as society as a whole often stereotypes people with disabilities, so, too, do health care providers. Inadequate access to information and opportunities for appropriate health care and health promotion are other barriers to the high quality health care that persons with disabilities are entitled. Legislation and court decisions have mandated that people with disabilities have equal access to facilities and services; however, they continue to report receiving inadequate health care and have reported being refused care because they have a disability.1,19,20 A number of factors have been suggested to explain this refusal, including the extra time required to provide care for a person with a disability and the pressure to see many patients per day without extra reimbursement even if the patient requires additional time.18 But the fact remains that people with disabilities have been refused health care. The issue of inadequate health care of people with disabilities is one that is likely to grow in importance with the aging of the population and the increasing numbers of people with early onset of disability who survive into adulthood and older age. Despite the growth of the population of people in the US with disabilities, nurses and other health care providers tend to have negative perceptions of persons with disabilities and tend to ignore their health care needs.21,22 Nursing care provided to many persons with disabilities has been reported to be demeaning in that it reflects negative stereotypical images and is often disabling rather than empowering.23–25 People with disabilities have reported that their health care providers tend to either ignore health concerns other than their disabilities or ignore their disabilities altogether despite the fact that the presence of a disability may affect other health care needs and limit their access to health care and preventive health screening.1,18 As a consequence of health care providers’ negative attitudes and stereotyping of people with disabilities, many health-related issues (eg, health promotion, prevention of secondary conditions, preventive health screening, sexuality, reproductive health care) are often overlooked or ignored when the patient has a disability. Women with disabilities that limit their mobility undergo gynecological exams, mammograms, and bone mineral density testing less often than recommended and significantly less often than women without disabilities.22,26 –39
Smeltzer
Role of Nursing in Response to the Call to Action While federal, state, and local action is needed to address many of these issues through federal and state policy, programs, and improved financial mechanisms,1 there are some issues that nursing as a profession must address if we are to be part of the solution rather than part of the problem that limits health care for people with disabilities. Nursing has staked a claim to be holistic in its approach to patients in its care5 and individuals with disabilities should be able to expect that this holistic approach extends to and includes them. The health care issues associated with disability cannot be relegated only to long-term care and rehabilitation facilities. Because of the growing population of persons with disabilities in the US, it is likely that all nurses will encounter men, women, and children with disabilities in their nursing practice. When the general negative reactions and feelings of persons with disabilities about the care they have received from all categories of health care providers (including nurses) are examined, the need for the nursing community to closely examine the issue becomes evident. Several issues that contribute to the unfavorable reactions and feelings on the part of people with disabilities include negative attitudes toward them on the part of health care providers, inadequate attention to disability in the curricula of the health-related professions,1,18 and inadequate exposure of health care professionals to persons with disability during their education and training. Nurses at all levels and in all settings, not only rehabilitation settings, need the knowledge, skills, and attitudes that underlie the delivery of equitable health care to people with disabilities. These facts serve as a reminder that nursing as a discipline needs to do a better job of addressing these issues through nursing practice, education, research, and leadership. Nursing Practice Nursing practice issues related to disability include negative attitudes toward persons with disabilities, inaccessibility of clinical settings, need for advocacy, and the need for education and training of nurses and other health care providers about disability. Many nurses currently working in practice settings are unlikely to have received much formal content about disability and the modifications in clinical settings and practice needed to provide nursing care to those with disabilities. Yet nurses working in these settings are ideally positioned to make a difference in the quality of care by identifying and reducing attitudinal and structural barriers to care. Negative attitudes on the part of health care professionals have been identified as a powerful barrier to quality care for people with disabilities.21,22 Such barriers can result in failure to fully assess and address the health needs of people with disabilities because of the belief that they are likely to have J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
191
Surgeon General’s call to action
Smeltzer
shortened life spans and poor quality of life and are unlikely to derive much benefit from health promotion and health screening.18,32 Because of the importance of accessibility, it is essential that nurses assess the health care settings in which they practice to identify barriers and work to remove those barriers through advocacy. Assessment of the accessibility of one’s own health care facility (eg, hospital, clinic, office, nursing center, etc.) is an essential step to improve the ability of people with disabilities to obtain health care. Inadequate parking facilities, narrow doors, high desks, inaccessible restrooms, nonadjustable exam tables, and lack of educational materials in alternate formats are but a few barriers that serve as major obstacles for people with disabilities. Simple and often inexpensive modifications (eg, having grab bars installed in a rest room, adding a clothes hook low on the rest room door, or having the paper towel dispenser lowered for easy reach from a wheelchair) may be effective in increasing accessibility for many people with disabilities but are often overlooked by those without disabilities. Because accessibility is in the eye of the beholder, what appears accessible to an individual without a disability is often inaccessible to those with sensory disabilities who must actually use the facility or who must move about the facility using assistive devices and wheelchairs. Thus, it is important to consult with people with disabilities about the obstacles they confront in seeking health care. People with disabilities have reported that they are often excluded from conversations about their own health and are treated as if they are children who are incapable of making informed decisions about their health.1,40 Acknowledging that those who have lived with disabilities are often the most knowledgeable about their disability is key;1,41 encouraging patients with disabilities to “take charge” is empowering and promotes their independence.18 It is equally important to allow and encourage people with disabilities to explain what they need rather than deciding for them.1,18 It is important for nurses to identify strategies to address the health-related needs of people with preexisting disabilities during hospitalization. These strategies include developing and implementing approaches that improve patient care while allowing people with disabilities to exercise as much independence as they desire. Such strategies are important for their wellbeing and can be empowering rather than disabling. However, it is equally important to provide care to those with disabilities during acute illness or hospitalization who are unable to do so themselves. Ensuring the availability of assistive devices (ie, communication devices or interpreters during hospitalization and health care visits) and modifying teaching and providing alternate formats of educational materials to accommodate disability are important components of health care 192
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
that need to be considered. Initiating steps to prevent secondary conditions (eg, deconditioning, pressure ulcers) is important in returning the patient with a disability to baseline function following a hospital stay or a period of enforced bed rest. Attention to other conditions often associated with disability (eg, obesity, depression, substance abuse) through health promotion is important for people with disabilities during all patient contacts.1,39 Developing and using advocacy skills to address the need for improved health care for people with disabilities are important strategies for nurses who want to improve the health and well-being of this population. The goal is for nurses to become advocates in their interactions with and for persons with disabilities across all settings, age groups, and disabilities.42 Because the health issues of people with disabilities have not been a major focus of nursing education, staff education is important to address these issues among nurses in practice. Individuals with disabilities are often eager to participate in programs to explain the issues to health care personnel and their participation in staff education efforts should be encouraged.
Nursing Education Inadequate attention to disability in nursing and other health professions curricula, use of inappropriate models of disability, and inadequate exposure of nursing students to persons with disability during their education are issues that must be addressed if care of people with disabilities is to be improved.1,22–24,42,43 While schools of nursing report addressing disabling conditions (eg, spinal cord injury, cerebral palsy, stroke), few report discussing the concept of disability in other than rehabilitation settings or content.42 The existing literature on disability in nursing education has focused largely on methods to improve student sensitivity toward people with disabilities,44 – 46 but provides little direction about disability-related content appropriate or necessary for inclusion in nursing curricula. Increasing the sensitivity of students is an important issue in nursing education; however, faculty in schools of nursing cannot stop there. Systematic assessment of one’s own nursing curriculum would enable faculty to identify strategies to increase attention to disabilityrelated issues.42 The model of disability used influences how people with disabilities are viewed and treated by health care providers (see Table 1). Several models of disability exist; most of these models fit into 1 of 2 categories: the medical model or the social model. The medical model which views people with disabilities as ill or abnormal and requiring care determined by health care professionals who are considered the experts.24,47,48 In the medical model, disability is considered as residing within the individual with little attention given to the barriers encountered in the environment. The rehabiliO
U T L O O K
Surgeon General’s call to action
Smeltzer
Table 1. Models of Disability Model of Disability
Description
Comment
Medical Model
The medical model or illness approach is based on the view that disability is caused by disease or trauma and its resolution or solution is intervention provided and controlled by professionals.1 Disability is perceived as deviation from normality and the role of persons with disability is to accept the care determined by and imposed by health professionals who are considered the experts.24,47-48 In this model, disability is considered as residing within the individual.
This approach to disability has been rejected by many individuals with disability and disability advocacy groups,24,47-48 because it does not cover the full spectrum of issues related to living with a disability. Further, it ignores the ability of many individuals to live full and successful lives and to be independent, the impact of a disability on access to health care, and the need to modify how care is delivered because of a disability. The medical model reinforces the view that physicians, nurses and other health care professionals are best qualified to make key decisions about health issues. Individuals with disabilities are often regarded as tragic.15,23,51
Rehabilitation Model
The traditional rehabilitation model is based on the medical model and the belief that with adequate effort on the part of the person, the disability can be overcome. Persons with disabilities are often perceived as having failed if they do not overcome the disability.15,51 Similar to the medical model, the rehabilitation model suggests that care and support are determined by professionals.
This approach often fails to consider the reality of permanent disability. Because this model shares many characteristics of the medical model, it has been rejected by many people with disabilities.47-49
Social Model
The social model of disability views disability as socially constructed and a consequence of society’s lack of awareness and concern about those who may require some modifications to live full, productive lives.49 The model, referred to by some as the barriers model, views the medical diagnosis, illness or injury as having no part in disability. Rather, society is considered the cause of disability, which is considered a consequence of an environment created for the able-bodied majority.
This model has been criticized because it ignores or dismisses disease or injury as part of the picture, although such factors and their consequences may have a major role in the life of a person with a disability49 and may require intervention by health care providers at times. People with disabilities are encouraged to see any problems they encounter as emerging from barriers and negative attitudes of others in their social environment.47,49,52
Interface Model
The interface model is based on the premise that disability exists at the meeting point or interface between the person’s medical diagnosis and the environmental factors that affect disability. Disability is seen as neither the medical diagnosis nor the environment alone. In this model those individuals with disability define their own problems and seek solutions, which may include intervention by health care professionals including nurses. However, these interventions are designed collaboratively by those with disabilities and health care professionals. Disability is viewed as a life experience in which the person with the disability is in control and empowered.51
The interface model, developed by a nurse with a disability, identifies the role of the nurse that is congruent with the preferences of persons with disability but simultaneously recognizes the reality that disability may be a consequence of disease or trauma, areas in which nurses commonly practice.51 The model strongly suggests the need for nurses and nurse educators to address disability if nurses are to have a positive and empowering impact in their interaction with persons with disability in their care. The interface model is not well-known and, to date, has not been adopted by many nursing or other health care groups or organizations.
Biopsychosocial Model
The biopsychosocial approach or model of disability views disability as arising from a combination of factors at the physical, emotional and environmental levels.1
This approach or model takes the focus beyond the individual and addresses issues that interact to affect the ability of the individual to maintain as high a level of health and wellbeing as possible and to function within society. This approach is consistent with the WHO’s revised definitions of disability.16 It recognizes that disabilities are often due to illness or injury and does not dismiss the importance of the impact of biological, emotional and environmental issues on health, well-being, and function in society.50 Critiques of this model have suggested that the disabling condition, rather than the person and the experience of the person with a disability, is the defining construct of the biopsychosocial model.17
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
193
Surgeon General’s call to action
Smeltzer
tation model is a variation of the medical model. At the other end of the spectrum is the social model of disability that views disability as a consequence of society’s lack of awareness and concern about those who may require some modifications to live full, productive lives.49 The model, also referred to as the barriers model, considers society to be the cause of disability, which is considered a consequence of an environment created for the able-bodied majority.49,50 The interface and biopsychosocial models of disability reflect change in focus and include the interaction of the environment and the physical and psychological consequences of disability.1,50,51 The medical model often serves as the basis for selection and development of course content even if nursing models, functional health patterns, or nursing diagnoses, interventions, and outcomes are used to guide content selection and discussion. A 2005 study42 of integration of disability-related content in nursing curricula revealed that those nursing programs that reported use of models of disability in their curricula tend to use the medical model or rehabilitation model of disability rather than the models such as the interface, social, or biopsychosocial models, which are considered more acceptable and empowering by persons with disabilities. Identifying content and learning experiences that give students positive experiences with people living with disabilities is important if nurse educators are to prepare nurses of the future with sensitivity and positive attitudes toward people with disabilities. Providing disability experiences in which students are placed in situations that simulate disability to promote their insight into disability may be one strategy to accomplish this. Such learning experiences, however, must be planned and implemented with care and with input and direction from people with disabilities, to avoid giving students the impression that disability is the worst possible and most tragic condition possible and that people with disabilities are to be pitied.24,52 Teaching about rehabilitation nursing, as currently conceptualized, does not address the gaps in students’ understanding of disability-related concepts. Rather, teaching about disability issues only in the context of rehabilitation tends to suggest to students that people with disabilities will be found only in rehabilitation settings. In the study of integration of disability issues in nursing curricula,42 faculty reported that disability is not very important issue in their nursing curricula and reported that issues that are “more important” would have to be deleted if disability-related issues are to be included.. Although nursing faculty generally identify aging as an important issue in their nursing curricula, few health care professions faculty—including nursing faculty— reported that they teach about aging in people with preexisting disability.53 The need to address disability-related issues is not limited to undergraduate nursing programs. Faculty in 194
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
graduate nursing programs that prepare students for advanced practice roles need to introduce the concepts of disability to their students if they are to be adequately prepared to interact with people with disabilities; to communicate with them despite a variety of disabilities that affect speech, hearing, vision, and cognition; to conduct physical assessments regardless of the presence of severe disability; and to provide health care, health screening, and health promotion for all patients including those with disabilities. Collaborating with faculty in disability studies, if available in a college or university, is another strategy that has the potential to increase the awareness of and sensitivity to the issue among students and faculty. Admitting students with disabilities into nursing programs rather than automatically denying them admission across the board is another strategy that has the potential to increase the awareness and sensitivity of students, faculty, and nurses in practice about disability, as well as to increase the compliance of nursing programs with the legal mandates set forth in the ADA and other relevant legislation. Considerable effort may be needed to encourage and enable individuals with disabilities to enter and complete nursing education without undue hardships and the need to demonstrate competencies way beyond what is required of students without disabilities.43,54 Marks has stated that it is time that nursing faculty replace their question that asks if persons with disabilities have a place in the nursing profession with one that asks when nursing will welcome students with disabilities into nursing programs.43 She has suggested that the inclusion of students with disabilities in nursing will improve the quality of care of patients with disabilities because of their unique understanding of disability issues. Enrichment of the educational experiences in schools of nursing by working alongside classmates with disabilities has been reported.55 Greater exposure of nursing students to people with disabilities who are functioning at high levels, including fellow nursing students, would promote positive attitudes toward people with disabilities. Faculty development programs that address strategies to integrate students with disabilities into nursing programs have been demonstrated to be effective in increasing the knowledge level and improving the perceptions and attitudes of nursing faculty members toward students with disabilities.55,56 Given the view of many faculty that disability issues are not very important, the need for addressing these perceptions and attitudes is clear.
Nursing Research A number of nurse scientists and researchers have focused their research on disability and health issues of individuals with disabilities,36,38,42,43,57– 62 but the number is relatively small given the large number of people in the US with disabilities. People with pre-existing disabilities may be excluded from studies because of the potentially confounding effects of disabilities on study outcomes.63 O
U T L O O K
Surgeon General’s call to action
Because of the need to examine the effects of disabilities on other health issues and on interventions, strategies are needed to include men, women, and children with disabilities and to evaluate the effectiveness of interventions on people with disabilities and on those without disabilities. Development and testing of valid and reliable instruments to address concepts of interest to nursing for use in studies with people with diverse disabling conditions would promote development of programs of research across disabling conditions and comparison of health issues and interventions across disabilities. Examination of methodological issues related to nursing studies of individuals with disabilities and the modifications required in recruitment, measurement, and data collection in studies with people with diverse types and severity of disability would be a pivotal step in effecting changes in the design of studies with this population. Of particular importance is the need for participatory action research in which individuals with disabilities have a voice in determining research priorities and participate actively in the design and conduct of research.1 Specific issues related to human subject considerations must be examined to ensure that people with disabilities are not excluded from studies because of their disabilities. Modifications in recruitment strategies and methods of assessing cognitive status may be required to ensure that people with disabilities, including cognitive or intellectual disabilities, are included in studies without increasing the risk of coercion or violation of other ethical principles. To exclude people with disabilities from studies limits the application of findings of studies to this growing population and violates the ethical principle of justice. A national nursing research conference or workshop that addresses research issues affecting individuals with disabilities, and that are of specific interest to nurses and nurse researchers is one strategy that would increase attention to disability-related issues. Major federal funding agencies in the US that have specifically identified the need for additional research on the health issues and health status of people with disabilities (Agency for Healthcare Research and Quality, National Institutes of Health, Centers for Disease Control and Prevention, and the US Department of Education’s National Institute of Disability and Rehabilitation Research) could be approached for support of such a conference with the goal of increasing the number and quality of studies that address the health issues of this growing population.
Nursing Leadership Many of the strategies suggested above will never be implemented in nursing education or practice without action on the part of influential nursing organizations and nursing leaders. Endorsement of the Call to Action1 by the major nursing organizations is needed to effect change.
Smeltzer
The American Association of Colleges of Nursing, National League for Nursing, American Nurses Association, American Academy of Nursing, and specialty nursing organizations should consider convening a task force charged to identify and develop a model curriculum and to identify essential disability-related content. Specialty organizations with a special interest in the issues, including but not limited to the Association of Rehabilitation Nurses and the National Organization of Nurses with Disabilities, would be important participants on this task force. People with disabilities must also be key participants in the discussion to ensure that those whose interests are at stake are adequately addressed.1 Following agreement on essential content and competencies to be addressed at all levels of nursing education, concerted efforts will be necessary to disseminate the competencies through conferences and publication, and through newsletters of professional nursing organizations. Once essential disability-related content and related competences are identified, efforts must be taken to integrate knowledge of disability issues in requirements for nursing licensure, re-licensure, and certification. Nursing leadership needs to advocate for the redesign of health care delivery systems to ensure accessibility, and advocate for funding for community-based services that will promote the ability of people with disabilities to remain in the labor force and earn an income and accrue health benefits. Nursing needs to support legislation that increases accessibility for persons with disabilities and it needs to serve on decision-making committees. Nurses need to collaborate with and be visible to those with disabilities and to act as advocates.
CONCLUSIONS The Surgeon General’s Call to Action1 identified a number of issues that can and must be addressed if barriers to health and wellness for people with disabilities are to be eliminated. The Call to Action also identified 13 strategies to ensure that health care providers have the knowledge and skills needed to address these issues and would serve as an ideal starting point for nursing. The nursing profession has a moral, professional, and legal imperative to do its part in improving the health and wellness of people with disabilities. As stated by the Surgeon General, working together, we must be a nation that makes health and wellness for people with disabilities a national priority.1 As a helping profession that considers itself holistic in nature, nursing must do its part through practice, education, research, and leadership to address the problems identified by Surgeon General Carmona in his Call to Action by making health and wellness for people with disabilities its own priority. References are available at http://www.nursingout look.org.
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
195
Surgeon General’s call to action
Smeltzer
REFERENCES 1. United States Public Health Service. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Rockville, MD: Public Health Service, Office of the Surgeon General; 2005. Available at: http://www.surgeongeneral.gov. Accessed March 12, 2006. 2. Mitka M. Enabling students to deal with the disabled. JAMA 1999;281:595-6. 3. US Census Bureau. Disability status, 2000. Washington, DC: U.S. Department of Commerce; 2003. 4. American Nurses Association. Nursing’s social policy statement. 2nd ed. Silver Spring, MD: ANA; 2003. 5. American Nurses Association. Nursing: Scope and standards of practice. Silver Spring, MD: ANA; 2004. 6. Carmona RH. A call to caring: Remarks at press conference to launch “The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities” July 26, 2005. Available at: http://www.surgeongeneral.gov/news/ speeches/07262005.html. Accessed November 10, 2006. 7. Vandenakker CB, Glass DD. Menopause and aging with disability. Phys Med Rehabil Clin N Am 2001;12:133-51. 8. Yang Q, Rasmussen SA, Friedman JM. Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. Lancet 2002;359:1019-25. 9. National Institute of Child Health and Human Development, National Institutes of Health. Facts About Down Syndrome, 2006. Available at: http://www.nichd.nih.gov/publications/ pubs/downsyndrome.cfm. Accessed November 10, 2006. 10. National Heart, Lung and Blood Institute, National Institutes of Health. Facts about cystic fibrosis. Available at: http:// www.healingwell.com/library/cysticfibrosis/info2.asp. Accessed November 10, 2006. 11. National Spinal Cord Injury Statistical Center. Spinal cord injury: Facts and figures at a glance, 2006. Birmingham, AL: University of Alabama; 2006. Available at: http://www. spinalcord.uab.edu. Accessed November 10, 2006. 12. United States Public Health Service. Healthy People 2010. Washington, DC: U.S. Department of Health and Human Services; 2000. 13. Jans L, Stoddard S. Chartbook on Women and Disability in the United States. Washington, DC: U.S. Department of Education. National Institute on Disability and Rehabilitation Research; 1999. 14. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps. Geneva: WHO; 1980. 15. Lollar DJ, Crews JE. Redefining the role of public health in disability. Annu Rev Public Health 2003;24:195-208. 16. World Health Organization. International Classification of Functioning, Disability and Health-ICF. Geneva: WHO; 2001. 17. Lutz BJ, Bowers BJ. Disability in everyday life. Qual Health Res 2005;15:1037-54. 18. Iezzoni LI. Going beyond disease to address disability. N Engl J Med 2006;355:976-9. 19. Becker H, Stuifbergen A, Tinkle M. Reproductive health care experiences of women with physical disabilities: A qualitative study. Arch Phys Med Rehabil 1997;78:S26-533. 20. Nosek MA, Young ME, Rintala DH, Howland CA, Foley CC, Bennett JL, et al. Barriers to reproductive health
195.e1
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
21. 22.
23.
24. 25. 26. 27.
28.
29.
30.
31.
32.
33.
34.
35.
36.
37.
38.
39.
40.
O
maintenance among women with physical disabilities. J Womens Health 1995;4:505-18. Lillestø B. Violation in caring for the physically disabled. West J Nurs Res 1997;19;282-96. Nosek MA, Howland CA, Rintala DH, Young ME, Chanpong GF, et al. National Study of Women with Physical Disabilities: Final Report. Houston, TX: Center for Research on Women with Disabilities; 1997. Scullion P. Conceptualizing disability in nursing: Some evidence from students and their teachers. J Adv Nurs 1999;29:648-57. Scullion P. Enabling disabled people: Responsibilities of nurse education. Brit J Nurs 2000;9:1010-15. Northway R. Disability and oppression: Some implications for nurses and nursing. J Adv Nurs 1997;26:736-43. Thierry JM. Promoting the health and wellness of women with disabilities. J Womens Health 1998;7:505-7. Thierry JM. Increasing breast and cervical cancer screening among women with disabilities. J Womens Health Gend Based Med 2000;9:9-12. Thierry JM, Cyril JK. Health of women with disabilities: From data to action. In: Welner SL, Haseltine F, editors. Welner’s Guide to the Care of Women with Disabilities. Philadelphia, PA: Lippincott Williams and Wilkins; 2004. Iezzoni LI, McCarthy EP, Davis RB, Siebens H, et al. Mobility impairments and use of screening and preventive services. Am J Public Health 2000;90:955-61. Iezzoni LI, McCarthy EP, Davis RB, Harris-David L, O’Day B, et al. Use of screening and preventive services among women with disabilities. Am J Med Qual 2001;16:135-44. Chan L, Doctor JN, MacLehose RF, Lawson H, Rosenblatt RA, Baldwin LM, Jha A, et al. Do Medicare patients with disabilities receive preventive services? A population-based study. Arch Phys Med Rehabil 1999;80:642-6. Cheng E, Myers L, Wolf S, Shatin D, Cui XP, Ellison G, Belin T, Vickrey B, et al. Mobility impairments and use of preventive services in women with multiple sclerosis: Observational study. BMJ 2001;323:986-9. Nosek MA, Howland CA. Breast and cervical cancer screening among women with physical disabilities. Arch Phys Med Rehabil 1997;78:S39-S44. Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil 2004;85:749-57. Veltman A, Stewart DE, Tardif GS, Branigan M, et al. Perceptions of primary health care services among people with physical disabilities—part 1: access issues. MedGenMed 2001;3:18. Smeltzer SC, Zimmerman V, Capriotti T. Bone mineral density and osteoporosis risks in women with disabilities. Arch Phys Med Rehab 2005;86;582-6. Smeltzer SC. Preventive health screening for breast and cervical cancer and osteoporosis in women with physical disabilities. Fam Commu Health 2006;29:35S-43S. Kopac CA, Fritz J, Holt RA. Gynecologic and reproductive services for women with developmental disabilities. Clinical Excellence for Nurse Practitioners 2(2):88-95, 1998 Mar. Coyle CP, Santiago MC. Healthcare utilization among women with physical disabilities. Medscape Womens Health 2002;7:2. Smeltzer SC, Sharts-Hopko NC, Ott B, Zimmerman V, Duffin J, Perspectives of women with disabilities on reach-
U T L O O K
Surgeon General’s call to action
41.
42.
43.
44.
45.
46.
47.
48.
49. 50.
51. 52.
ing those who are hard to reach. J Neurosci Nurs 2007;39:(3):163-171. Smeltzer SC. Pregnancy in women with disabilities. Journal of Obstetrical, Gynecology, and Neonatal Nursing 2007;36: (1):88-96. Smeltzer SC, Dolen MA, Robinson-Smith G, Zimmerman V, et al. Integration of disability-related content in nursing curricula. Nurs Educ Perspect 2005;26:210-16 Marks B. Cultural competence revisited: Nursing students with disabilities. Journal of Nursing Education 46:(2):70-4, 2007 Feb Lindgren CL, Oermann MH. Effects of an educational intervention on students’ attitudes toward the disabled. J Nurs Ed 1993;32:121-6. Oermann MH, Lindgren CL. An educational program’s effects on students attitudes toward people with disabilities: A 1-year follow-up. Rehabil Nurs 1995;20:6-10. Thompson TLC, Emrich K, Moore G. The effect of curriculum on the attitudes of nursing students toward disability. Rehabil Nurs 2003;28:27-30, 35. Richardson M. Addressing barriers: Disabled rights and the implications for nursing of the social construct of disability. J Adv Nurs 1997;25:1269-75. Nolan M, Nolan J. Rehabilitation, chronic illness and disability: The missing elements in nurse education. J Adv Nurs 1999;29:958-66. Shakespeare T, Watson N. Defending the social model. Disabil Soc 1997;12:293-300. Iezzoni LI. When walking fails: Mobility problems of adults with chronic conditions. Berkeley, CA, New York, NY: University of California Press and the Milbank Memorial Fund; 2003. Goodall CJ. Is disability any business of nurse education? Nurse Ed Today 1995;15:323-7. French S. Simulation exercises in disability awareness training. Disabil Handicap Soc 1992;7:257-66.
Smeltzer 53. Tremblay M, Tryssenaar J, Clark K, Richardson J, Watt S, Rosenthal C, et al. Aging with a preexisting disability: Developing a bibliography and curriculum guide for health and social science educators. Edu Gerontol 1997;23:567-79. 54. Sowers J, Smith MR. Nursing faculty members’ perceptions, knowledge, and concerns about students with disabilities. J Nurs Ed 2004;42:213-8. 55. Evans BC. Nursing education for students with disabilities: Our students, teachers. Ann Rev Nurs Ed 2005: 3-22. 56. Sowers J, Smith MR. Evaluation of the effects of an inservice training program on nursing faculty members’ perceptions, knowledge, and concerns about students with disabilities. J Nurs Ed 2004;43:248-52. 57. Stuifbergen AK, Seraphine A, Harrison T, Adachi E, et al. An explanatory model of health promotion and quality of life for persons with post-polio syndrome. Soc Sci Med 2005; 60:383-93. 58. Stuifbergen AK, Harrison TC, Becker H, Carter P, et al. Adaptation of a wellness intervention for women with chronic disabling conditions. J Holistic Nurs 2004;22:1231. 59. Stuifbergen AK. Secondary conditions and life satisfaction among polio survivors. Rehabil Nurs 2005;30:173-9. 60. Harrison T, Stuifbergen A, Adachi E, Becker H, et al. Marriage, impairment, and acceptance in persons with multiple sclerosis. West J Nurs Res 2004;26:266-85. 61. Sharts-Hopko NC, Smeltzer S. Perceptions of women with multiple sclerosis about osteoporosis follow-up. J Neurosci Nurs 2004;36:189-94,199. 62. Sharts-Hopko NC, Sullivan MP. Obesity as a confounding health factor among women with mobility impairment. J Am Acad Nurse Pract 2003;15:438-43. 63. Smeltzer SC, Zimmerman V. Usefulness of the SCORE Index as a predictor of osteoporosis in women with disabilities. Ortho Nurs 2005;24:33-9.
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
195.e2
In 2005, the US Surgeon General issued a Call to Action to Improve the Health and Wellness of Persons with Disabilities,1 with the goal being the improvement of the health status of men, women, and children with disabilities. Despite federal legislation to address inequities in health care for the 54 – 60 million people in the US with disabilities,2,3 many have reported negative experiences in their interactions with health care providers from all health professions. Collectively, the nursing profession has been silent in its response to this call. This article describes the current status of health care of individuals with disabilities in the US, and suggests appropriate responses by the nursing profession to the Surgeon General’s Call to Action.1 Specific suggestions are identified for nursing practice, education, research, nursing leaderships, and the profession of nursing as a whole.
I
n July of 2005, the Surgeon General’s Office disseminated the Call to Action to Improve the Health and Wellness of Persons with Disabilities.1 This call to action is too important for the nursing profession to ignore and it strikes too close to the core beliefs and values identified in nursing’s Social Policy Statement4 and Scope and Standards of Practice5 to leave to others. In his foreword to the document, Dr. Richard Carmona, then US Surgeon General, stated that the Call to Action is based on the need to ensure accessible, comprehensive health care for all persons with disabilities so that they are able to have full, engaged, and productive lives in their own communities.1 Accessible facilities, available and appropriate health care, and services that promote health and wellness are major requirements if people with disabilities are to experience the full lives that the Surgeon General identified as a goal for all. Of specific relevance to health care providers, including nurses, Surgeon General Carmona also identified the need for health care professionals to Suzanne C. Smeltzer is a Professor and Director, Center for Nursing Research at Villanova University College of Nursing, Villanova, PA. Reprint requests: Dr. Suzanne C. Smeltzer, Villanova University College of Nursing, 800 Lancaster Avenue, Villanova, PA 19085. E -mail: [email protected] Nurs Outlook 2007;55:189-195. 0029-6554/07/$–see front matter Copyright © 2007 Mosby, Inc. All rights reserved. doi:10.1016/j.outlook.2007.04.001
treat the whole person rather than the disability, and called for educators in the health care professions to teach about disability.1 The Call to Action is based on the principle that good health is necessary if individuals with disabilities are to have the freedom to work, learn, and engage in their families and communities. Surgeon General Carmona called for greater understanding among the public, health care providers, educators, and policy makers about disability and its impact on health status and health care of people with disabilities. In his press conference launching the Call to Action,6 the Surgeon General identified the following 4 specific goals: 1. Increased understanding nationwide that people with disabilities can lead long, healthy, and productive lives. 2. Increased knowledge among health care professionals, and increased availability of tools to screen, diagnose, and treat the whole person with a disability with dignity. 3. Increased awareness among people with disabilities of the steps they can take to develop and maintain a healthy lifestyle. 4. Increased accessible health care and support services to promote independence for people with disabilities. Challenges that need to be addressed to reach the 4 goals and strategies to overcome the challenges are addressed in the Surgeon General’s report. Specifically identified are the many barriers that people with disabilities encounter in their efforts to obtain health care and to participate in school, work, worship, family, and community activities.
DISABILITY: A LARGE AND GROWING ISSUE IN THE UNITED STATES The population of persons in the US with disabilities is estimated to be 54 – 60 million strong,2,3 representing 1 of every 4 or 5 US residents. This number is expected to increase exponentially as the population ages. Many individuals who previously might have succumbed to childhood illnesses and infectious diseases, adults with chronic disorders, and those who have experienced J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
189
Surgeon General’s call to action
Smeltzer
severe trauma are surviving and living well into adulthood and old age.1,7 Recent changes in life expectancy in people with disabilities clearly illustrate this. Since 1983, the life span of persons with Down syndrome has doubled,8,9 while the average life span of a person with cystic fibrosis, which was about 18 in 1985, is now 34 years of age.10 Almost all people with spinal cord injury (SCI) previously experienced very premature mortality because of complications; today, the expected life span is around 70 years of age, only 8 years shorter than that of someone without SCI.11 Developments in managing these and other disabling conditions have increased the number of individuals aging with pre-existing disabilities. As a result, there are growing numbers of children and young, middle-aged, and elderly adults with disabilities, including developmental disabilities. Although disabilities are often perceived as associated only with old age, national data demonstrate that disabilities occur across the life span.12 A common misperception is that most people with disabilities are in ill health, dependent, and incapacitated;1 for some this misperception translates to the belief that most people with disabilities are institutionalized or likely to require institutionalization. The reality is that the overwhelming majority of persons with disabilities reside in and contribute to the communities in which they live.1,3 Disabilities affect people of all age groups, races, ethnic groups, and socioeconomic and education levels. Because it is so diverse, pervasive, and wide-ranging, disability has largely been ignored by the health care professions, including the nursing profession, which have not identified and adopted a unique focus on disability as their own.
between health conditions (ie, diseases, disorders, injuries, trauma, etc.) and contextual factors (ie, personal and environmental factors). Others17 describe disability as a multifaceted, complex experience that is integrated into the lives of persons with disabilities. The degree to which that integration occurs is influenced by 3 disability-related factors: (1) the effects of the disabling condition, (2) others’ perceptions of disability, and (3) the need for, access to, and use of resources by the person with a disability.
DISABILITY VS DISABLING CONDITIONS In contrast to disability, which reflects one’s interaction with the environment, disabling conditions— often referred to as disabilities—are those physical and mental/ psychological disorders that have the potential to cause disability. Although knowledge about conditions and disorders with the potential to cause disability is important for health care providers, knowledge about the vast array of different disabling conditions does not guarantee that one will understand or appreciate the experience of living with a disability or consider the experience of having a disability when providing care.18 Health care providers often focus either on the disability or ignore it entirely instead of considering how disability affects other health issues and how other health issues, in turn, affect disability.1,18 Disabilities (ie, disabling conditions) can be categorized as developmental in nature, acquired due to acute or chronic illness or injury, or age-associated. Disabilities can result in impairment of physical function or mental health, cognition, speech, language, or self-care. They can affect mobility, sensory function (hearing or vision), or the ability to learn, remember, concentrate, or communicate. Disabilities can affect the ability to work, shop, care for oneself, or obtain health care.3 While many disabilities are visible, some cannot be seen by others; these invisible disabilities (eg, cardiac insufficiency, sensory impairment, and some intellectual or cognitive impairments) are often as disabling as those that are visible and obvious to others. Some people can be temporarily disabled because of an injury or acute exacerbation of a chronic disorder and later return to full functioning; many others have disabilities that are stable or relentlessly progressive over time. Disabilities can range from those with relatively mild limitations that necessitate no assistive aids or that can be managed with changes in lifestyle to significant disabilities that necessitate substantial care and advanced technology to enable mobility, self-care, and breathing.1
DEFINITION OF DISABILITY There are many definitions of disability and many types of disabling conditions. While many of the definitions of disability serve different legal, social, and political purposes, there is general agreement that disability is associated with a limitation in a major activity.13 In 1980, the World Health Organization (WHO) defined disability as a limitation in a person’s abilities (eg, mobility, personal care, communication, behavior); impairment as an alteration in body systems (eg, neurological, respiratory, urologic); and handicap as the disadvantages experienced by people in their environment (eg, in the workplace, economic sufficiency, and independence).14,15 In 2001, WHO revised its definitions to change the focus from a classification system based on consequences of disease to one that is focused on components of health.16 In the revised classification system, disability is an umbrella term for impairments, activity limitations, participation restrictions, and environmental factors. Impairment is defined by WHO as a loss or abnormality in body structure or physiological functions, including mental functions. A person’s functioning or disability is viewed as a dynamic interaction 190
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
HEALTH CARE OF PEOPLE WITH DISABILITIES Eliminating disparities in health care for individuals with disabilities was identified as a national objective for the first time in 2000 in Healthy People 2010.12 The Rehabilitation Act of 1973, the American with DisabilO
U T L O O K
Surgeon General’s call to action
ities Act (ADA) of 1990, the Olmstead decision of 1999, and the New Freedom Initiative of 2001 have been enacted in an effort to improve access for people with disabilities to facilities and services, including those related to health care. However, those with disabilities continue to report barriers to accessible health care.1 These barriers are structural, environmental, and attitudinal in nature. Some of the challenges that are not as well-recognized and serve as additional barriers are those resulting from lack of knowledge, awareness, and sensitivity on the part of health care providers. Just as society as a whole often stereotypes people with disabilities, so, too, do health care providers. Inadequate access to information and opportunities for appropriate health care and health promotion are other barriers to the high quality health care that persons with disabilities are entitled. Legislation and court decisions have mandated that people with disabilities have equal access to facilities and services; however, they continue to report receiving inadequate health care and have reported being refused care because they have a disability.1,19,20 A number of factors have been suggested to explain this refusal, including the extra time required to provide care for a person with a disability and the pressure to see many patients per day without extra reimbursement even if the patient requires additional time.18 But the fact remains that people with disabilities have been refused health care. The issue of inadequate health care of people with disabilities is one that is likely to grow in importance with the aging of the population and the increasing numbers of people with early onset of disability who survive into adulthood and older age. Despite the growth of the population of people in the US with disabilities, nurses and other health care providers tend to have negative perceptions of persons with disabilities and tend to ignore their health care needs.21,22 Nursing care provided to many persons with disabilities has been reported to be demeaning in that it reflects negative stereotypical images and is often disabling rather than empowering.23–25 People with disabilities have reported that their health care providers tend to either ignore health concerns other than their disabilities or ignore their disabilities altogether despite the fact that the presence of a disability may affect other health care needs and limit their access to health care and preventive health screening.1,18 As a consequence of health care providers’ negative attitudes and stereotyping of people with disabilities, many health-related issues (eg, health promotion, prevention of secondary conditions, preventive health screening, sexuality, reproductive health care) are often overlooked or ignored when the patient has a disability. Women with disabilities that limit their mobility undergo gynecological exams, mammograms, and bone mineral density testing less often than recommended and significantly less often than women without disabilities.22,26 –39
Smeltzer
Role of Nursing in Response to the Call to Action While federal, state, and local action is needed to address many of these issues through federal and state policy, programs, and improved financial mechanisms,1 there are some issues that nursing as a profession must address if we are to be part of the solution rather than part of the problem that limits health care for people with disabilities. Nursing has staked a claim to be holistic in its approach to patients in its care5 and individuals with disabilities should be able to expect that this holistic approach extends to and includes them. The health care issues associated with disability cannot be relegated only to long-term care and rehabilitation facilities. Because of the growing population of persons with disabilities in the US, it is likely that all nurses will encounter men, women, and children with disabilities in their nursing practice. When the general negative reactions and feelings of persons with disabilities about the care they have received from all categories of health care providers (including nurses) are examined, the need for the nursing community to closely examine the issue becomes evident. Several issues that contribute to the unfavorable reactions and feelings on the part of people with disabilities include negative attitudes toward them on the part of health care providers, inadequate attention to disability in the curricula of the health-related professions,1,18 and inadequate exposure of health care professionals to persons with disability during their education and training. Nurses at all levels and in all settings, not only rehabilitation settings, need the knowledge, skills, and attitudes that underlie the delivery of equitable health care to people with disabilities. These facts serve as a reminder that nursing as a discipline needs to do a better job of addressing these issues through nursing practice, education, research, and leadership. Nursing Practice Nursing practice issues related to disability include negative attitudes toward persons with disabilities, inaccessibility of clinical settings, need for advocacy, and the need for education and training of nurses and other health care providers about disability. Many nurses currently working in practice settings are unlikely to have received much formal content about disability and the modifications in clinical settings and practice needed to provide nursing care to those with disabilities. Yet nurses working in these settings are ideally positioned to make a difference in the quality of care by identifying and reducing attitudinal and structural barriers to care. Negative attitudes on the part of health care professionals have been identified as a powerful barrier to quality care for people with disabilities.21,22 Such barriers can result in failure to fully assess and address the health needs of people with disabilities because of the belief that they are likely to have J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
191
Surgeon General’s call to action
Smeltzer
shortened life spans and poor quality of life and are unlikely to derive much benefit from health promotion and health screening.18,32 Because of the importance of accessibility, it is essential that nurses assess the health care settings in which they practice to identify barriers and work to remove those barriers through advocacy. Assessment of the accessibility of one’s own health care facility (eg, hospital, clinic, office, nursing center, etc.) is an essential step to improve the ability of people with disabilities to obtain health care. Inadequate parking facilities, narrow doors, high desks, inaccessible restrooms, nonadjustable exam tables, and lack of educational materials in alternate formats are but a few barriers that serve as major obstacles for people with disabilities. Simple and often inexpensive modifications (eg, having grab bars installed in a rest room, adding a clothes hook low on the rest room door, or having the paper towel dispenser lowered for easy reach from a wheelchair) may be effective in increasing accessibility for many people with disabilities but are often overlooked by those without disabilities. Because accessibility is in the eye of the beholder, what appears accessible to an individual without a disability is often inaccessible to those with sensory disabilities who must actually use the facility or who must move about the facility using assistive devices and wheelchairs. Thus, it is important to consult with people with disabilities about the obstacles they confront in seeking health care. People with disabilities have reported that they are often excluded from conversations about their own health and are treated as if they are children who are incapable of making informed decisions about their health.1,40 Acknowledging that those who have lived with disabilities are often the most knowledgeable about their disability is key;1,41 encouraging patients with disabilities to “take charge” is empowering and promotes their independence.18 It is equally important to allow and encourage people with disabilities to explain what they need rather than deciding for them.1,18 It is important for nurses to identify strategies to address the health-related needs of people with preexisting disabilities during hospitalization. These strategies include developing and implementing approaches that improve patient care while allowing people with disabilities to exercise as much independence as they desire. Such strategies are important for their wellbeing and can be empowering rather than disabling. However, it is equally important to provide care to those with disabilities during acute illness or hospitalization who are unable to do so themselves. Ensuring the availability of assistive devices (ie, communication devices or interpreters during hospitalization and health care visits) and modifying teaching and providing alternate formats of educational materials to accommodate disability are important components of health care 192
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
that need to be considered. Initiating steps to prevent secondary conditions (eg, deconditioning, pressure ulcers) is important in returning the patient with a disability to baseline function following a hospital stay or a period of enforced bed rest. Attention to other conditions often associated with disability (eg, obesity, depression, substance abuse) through health promotion is important for people with disabilities during all patient contacts.1,39 Developing and using advocacy skills to address the need for improved health care for people with disabilities are important strategies for nurses who want to improve the health and well-being of this population. The goal is for nurses to become advocates in their interactions with and for persons with disabilities across all settings, age groups, and disabilities.42 Because the health issues of people with disabilities have not been a major focus of nursing education, staff education is important to address these issues among nurses in practice. Individuals with disabilities are often eager to participate in programs to explain the issues to health care personnel and their participation in staff education efforts should be encouraged.
Nursing Education Inadequate attention to disability in nursing and other health professions curricula, use of inappropriate models of disability, and inadequate exposure of nursing students to persons with disability during their education are issues that must be addressed if care of people with disabilities is to be improved.1,22–24,42,43 While schools of nursing report addressing disabling conditions (eg, spinal cord injury, cerebral palsy, stroke), few report discussing the concept of disability in other than rehabilitation settings or content.42 The existing literature on disability in nursing education has focused largely on methods to improve student sensitivity toward people with disabilities,44 – 46 but provides little direction about disability-related content appropriate or necessary for inclusion in nursing curricula. Increasing the sensitivity of students is an important issue in nursing education; however, faculty in schools of nursing cannot stop there. Systematic assessment of one’s own nursing curriculum would enable faculty to identify strategies to increase attention to disabilityrelated issues.42 The model of disability used influences how people with disabilities are viewed and treated by health care providers (see Table 1). Several models of disability exist; most of these models fit into 1 of 2 categories: the medical model or the social model. The medical model which views people with disabilities as ill or abnormal and requiring care determined by health care professionals who are considered the experts.24,47,48 In the medical model, disability is considered as residing within the individual with little attention given to the barriers encountered in the environment. The rehabiliO
U T L O O K
Surgeon General’s call to action
Smeltzer
Table 1. Models of Disability Model of Disability
Description
Comment
Medical Model
The medical model or illness approach is based on the view that disability is caused by disease or trauma and its resolution or solution is intervention provided and controlled by professionals.1 Disability is perceived as deviation from normality and the role of persons with disability is to accept the care determined by and imposed by health professionals who are considered the experts.24,47-48 In this model, disability is considered as residing within the individual.
This approach to disability has been rejected by many individuals with disability and disability advocacy groups,24,47-48 because it does not cover the full spectrum of issues related to living with a disability. Further, it ignores the ability of many individuals to live full and successful lives and to be independent, the impact of a disability on access to health care, and the need to modify how care is delivered because of a disability. The medical model reinforces the view that physicians, nurses and other health care professionals are best qualified to make key decisions about health issues. Individuals with disabilities are often regarded as tragic.15,23,51
Rehabilitation Model
The traditional rehabilitation model is based on the medical model and the belief that with adequate effort on the part of the person, the disability can be overcome. Persons with disabilities are often perceived as having failed if they do not overcome the disability.15,51 Similar to the medical model, the rehabilitation model suggests that care and support are determined by professionals.
This approach often fails to consider the reality of permanent disability. Because this model shares many characteristics of the medical model, it has been rejected by many people with disabilities.47-49
Social Model
The social model of disability views disability as socially constructed and a consequence of society’s lack of awareness and concern about those who may require some modifications to live full, productive lives.49 The model, referred to by some as the barriers model, views the medical diagnosis, illness or injury as having no part in disability. Rather, society is considered the cause of disability, which is considered a consequence of an environment created for the able-bodied majority.
This model has been criticized because it ignores or dismisses disease or injury as part of the picture, although such factors and their consequences may have a major role in the life of a person with a disability49 and may require intervention by health care providers at times. People with disabilities are encouraged to see any problems they encounter as emerging from barriers and negative attitudes of others in their social environment.47,49,52
Interface Model
The interface model is based on the premise that disability exists at the meeting point or interface between the person’s medical diagnosis and the environmental factors that affect disability. Disability is seen as neither the medical diagnosis nor the environment alone. In this model those individuals with disability define their own problems and seek solutions, which may include intervention by health care professionals including nurses. However, these interventions are designed collaboratively by those with disabilities and health care professionals. Disability is viewed as a life experience in which the person with the disability is in control and empowered.51
The interface model, developed by a nurse with a disability, identifies the role of the nurse that is congruent with the preferences of persons with disability but simultaneously recognizes the reality that disability may be a consequence of disease or trauma, areas in which nurses commonly practice.51 The model strongly suggests the need for nurses and nurse educators to address disability if nurses are to have a positive and empowering impact in their interaction with persons with disability in their care. The interface model is not well-known and, to date, has not been adopted by many nursing or other health care groups or organizations.
Biopsychosocial Model
The biopsychosocial approach or model of disability views disability as arising from a combination of factors at the physical, emotional and environmental levels.1
This approach or model takes the focus beyond the individual and addresses issues that interact to affect the ability of the individual to maintain as high a level of health and wellbeing as possible and to function within society. This approach is consistent with the WHO’s revised definitions of disability.16 It recognizes that disabilities are often due to illness or injury and does not dismiss the importance of the impact of biological, emotional and environmental issues on health, well-being, and function in society.50 Critiques of this model have suggested that the disabling condition, rather than the person and the experience of the person with a disability, is the defining construct of the biopsychosocial model.17
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
193
Surgeon General’s call to action
Smeltzer
tation model is a variation of the medical model. At the other end of the spectrum is the social model of disability that views disability as a consequence of society’s lack of awareness and concern about those who may require some modifications to live full, productive lives.49 The model, also referred to as the barriers model, considers society to be the cause of disability, which is considered a consequence of an environment created for the able-bodied majority.49,50 The interface and biopsychosocial models of disability reflect change in focus and include the interaction of the environment and the physical and psychological consequences of disability.1,50,51 The medical model often serves as the basis for selection and development of course content even if nursing models, functional health patterns, or nursing diagnoses, interventions, and outcomes are used to guide content selection and discussion. A 2005 study42 of integration of disability-related content in nursing curricula revealed that those nursing programs that reported use of models of disability in their curricula tend to use the medical model or rehabilitation model of disability rather than the models such as the interface, social, or biopsychosocial models, which are considered more acceptable and empowering by persons with disabilities. Identifying content and learning experiences that give students positive experiences with people living with disabilities is important if nurse educators are to prepare nurses of the future with sensitivity and positive attitudes toward people with disabilities. Providing disability experiences in which students are placed in situations that simulate disability to promote their insight into disability may be one strategy to accomplish this. Such learning experiences, however, must be planned and implemented with care and with input and direction from people with disabilities, to avoid giving students the impression that disability is the worst possible and most tragic condition possible and that people with disabilities are to be pitied.24,52 Teaching about rehabilitation nursing, as currently conceptualized, does not address the gaps in students’ understanding of disability-related concepts. Rather, teaching about disability issues only in the context of rehabilitation tends to suggest to students that people with disabilities will be found only in rehabilitation settings. In the study of integration of disability issues in nursing curricula,42 faculty reported that disability is not very important issue in their nursing curricula and reported that issues that are “more important” would have to be deleted if disability-related issues are to be included.. Although nursing faculty generally identify aging as an important issue in their nursing curricula, few health care professions faculty—including nursing faculty— reported that they teach about aging in people with preexisting disability.53 The need to address disability-related issues is not limited to undergraduate nursing programs. Faculty in 194
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
graduate nursing programs that prepare students for advanced practice roles need to introduce the concepts of disability to their students if they are to be adequately prepared to interact with people with disabilities; to communicate with them despite a variety of disabilities that affect speech, hearing, vision, and cognition; to conduct physical assessments regardless of the presence of severe disability; and to provide health care, health screening, and health promotion for all patients including those with disabilities. Collaborating with faculty in disability studies, if available in a college or university, is another strategy that has the potential to increase the awareness of and sensitivity to the issue among students and faculty. Admitting students with disabilities into nursing programs rather than automatically denying them admission across the board is another strategy that has the potential to increase the awareness and sensitivity of students, faculty, and nurses in practice about disability, as well as to increase the compliance of nursing programs with the legal mandates set forth in the ADA and other relevant legislation. Considerable effort may be needed to encourage and enable individuals with disabilities to enter and complete nursing education without undue hardships and the need to demonstrate competencies way beyond what is required of students without disabilities.43,54 Marks has stated that it is time that nursing faculty replace their question that asks if persons with disabilities have a place in the nursing profession with one that asks when nursing will welcome students with disabilities into nursing programs.43 She has suggested that the inclusion of students with disabilities in nursing will improve the quality of care of patients with disabilities because of their unique understanding of disability issues. Enrichment of the educational experiences in schools of nursing by working alongside classmates with disabilities has been reported.55 Greater exposure of nursing students to people with disabilities who are functioning at high levels, including fellow nursing students, would promote positive attitudes toward people with disabilities. Faculty development programs that address strategies to integrate students with disabilities into nursing programs have been demonstrated to be effective in increasing the knowledge level and improving the perceptions and attitudes of nursing faculty members toward students with disabilities.55,56 Given the view of many faculty that disability issues are not very important, the need for addressing these perceptions and attitudes is clear.
Nursing Research A number of nurse scientists and researchers have focused their research on disability and health issues of individuals with disabilities,36,38,42,43,57– 62 but the number is relatively small given the large number of people in the US with disabilities. People with pre-existing disabilities may be excluded from studies because of the potentially confounding effects of disabilities on study outcomes.63 O
U T L O O K
Surgeon General’s call to action
Because of the need to examine the effects of disabilities on other health issues and on interventions, strategies are needed to include men, women, and children with disabilities and to evaluate the effectiveness of interventions on people with disabilities and on those without disabilities. Development and testing of valid and reliable instruments to address concepts of interest to nursing for use in studies with people with diverse disabling conditions would promote development of programs of research across disabling conditions and comparison of health issues and interventions across disabilities. Examination of methodological issues related to nursing studies of individuals with disabilities and the modifications required in recruitment, measurement, and data collection in studies with people with diverse types and severity of disability would be a pivotal step in effecting changes in the design of studies with this population. Of particular importance is the need for participatory action research in which individuals with disabilities have a voice in determining research priorities and participate actively in the design and conduct of research.1 Specific issues related to human subject considerations must be examined to ensure that people with disabilities are not excluded from studies because of their disabilities. Modifications in recruitment strategies and methods of assessing cognitive status may be required to ensure that people with disabilities, including cognitive or intellectual disabilities, are included in studies without increasing the risk of coercion or violation of other ethical principles. To exclude people with disabilities from studies limits the application of findings of studies to this growing population and violates the ethical principle of justice. A national nursing research conference or workshop that addresses research issues affecting individuals with disabilities, and that are of specific interest to nurses and nurse researchers is one strategy that would increase attention to disability-related issues. Major federal funding agencies in the US that have specifically identified the need for additional research on the health issues and health status of people with disabilities (Agency for Healthcare Research and Quality, National Institutes of Health, Centers for Disease Control and Prevention, and the US Department of Education’s National Institute of Disability and Rehabilitation Research) could be approached for support of such a conference with the goal of increasing the number and quality of studies that address the health issues of this growing population.
Nursing Leadership Many of the strategies suggested above will never be implemented in nursing education or practice without action on the part of influential nursing organizations and nursing leaders. Endorsement of the Call to Action1 by the major nursing organizations is needed to effect change.
Smeltzer
The American Association of Colleges of Nursing, National League for Nursing, American Nurses Association, American Academy of Nursing, and specialty nursing organizations should consider convening a task force charged to identify and develop a model curriculum and to identify essential disability-related content. Specialty organizations with a special interest in the issues, including but not limited to the Association of Rehabilitation Nurses and the National Organization of Nurses with Disabilities, would be important participants on this task force. People with disabilities must also be key participants in the discussion to ensure that those whose interests are at stake are adequately addressed.1 Following agreement on essential content and competencies to be addressed at all levels of nursing education, concerted efforts will be necessary to disseminate the competencies through conferences and publication, and through newsletters of professional nursing organizations. Once essential disability-related content and related competences are identified, efforts must be taken to integrate knowledge of disability issues in requirements for nursing licensure, re-licensure, and certification. Nursing leadership needs to advocate for the redesign of health care delivery systems to ensure accessibility, and advocate for funding for community-based services that will promote the ability of people with disabilities to remain in the labor force and earn an income and accrue health benefits. Nursing needs to support legislation that increases accessibility for persons with disabilities and it needs to serve on decision-making committees. Nurses need to collaborate with and be visible to those with disabilities and to act as advocates.
CONCLUSIONS The Surgeon General’s Call to Action1 identified a number of issues that can and must be addressed if barriers to health and wellness for people with disabilities are to be eliminated. The Call to Action also identified 13 strategies to ensure that health care providers have the knowledge and skills needed to address these issues and would serve as an ideal starting point for nursing. The nursing profession has a moral, professional, and legal imperative to do its part in improving the health and wellness of people with disabilities. As stated by the Surgeon General, working together, we must be a nation that makes health and wellness for people with disabilities a national priority.1 As a helping profession that considers itself holistic in nature, nursing must do its part through practice, education, research, and leadership to address the problems identified by Surgeon General Carmona in his Call to Action by making health and wellness for people with disabilities its own priority. References are available at http://www.nursingout look.org.
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
195
Surgeon General’s call to action
Smeltzer
REFERENCES 1. United States Public Health Service. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Rockville, MD: Public Health Service, Office of the Surgeon General; 2005. Available at: http://www.surgeongeneral.gov. Accessed March 12, 2006. 2. Mitka M. Enabling students to deal with the disabled. JAMA 1999;281:595-6. 3. US Census Bureau. Disability status, 2000. Washington, DC: U.S. Department of Commerce; 2003. 4. American Nurses Association. Nursing’s social policy statement. 2nd ed. Silver Spring, MD: ANA; 2003. 5. American Nurses Association. Nursing: Scope and standards of practice. Silver Spring, MD: ANA; 2004. 6. Carmona RH. A call to caring: Remarks at press conference to launch “The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities” July 26, 2005. Available at: http://www.surgeongeneral.gov/news/ speeches/07262005.html. Accessed November 10, 2006. 7. Vandenakker CB, Glass DD. Menopause and aging with disability. Phys Med Rehabil Clin N Am 2001;12:133-51. 8. Yang Q, Rasmussen SA, Friedman JM. Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. Lancet 2002;359:1019-25. 9. National Institute of Child Health and Human Development, National Institutes of Health. Facts About Down Syndrome, 2006. Available at: http://www.nichd.nih.gov/publications/ pubs/downsyndrome.cfm. Accessed November 10, 2006. 10. National Heart, Lung and Blood Institute, National Institutes of Health. Facts about cystic fibrosis. Available at: http:// www.healingwell.com/library/cysticfibrosis/info2.asp. Accessed November 10, 2006. 11. National Spinal Cord Injury Statistical Center. Spinal cord injury: Facts and figures at a glance, 2006. Birmingham, AL: University of Alabama; 2006. Available at: http://www. spinalcord.uab.edu. Accessed November 10, 2006. 12. United States Public Health Service. Healthy People 2010. Washington, DC: U.S. Department of Health and Human Services; 2000. 13. Jans L, Stoddard S. Chartbook on Women and Disability in the United States. Washington, DC: U.S. Department of Education. National Institute on Disability and Rehabilitation Research; 1999. 14. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps. Geneva: WHO; 1980. 15. Lollar DJ, Crews JE. Redefining the role of public health in disability. Annu Rev Public Health 2003;24:195-208. 16. World Health Organization. International Classification of Functioning, Disability and Health-ICF. Geneva: WHO; 2001. 17. Lutz BJ, Bowers BJ. Disability in everyday life. Qual Health Res 2005;15:1037-54. 18. Iezzoni LI. Going beyond disease to address disability. N Engl J Med 2006;355:976-9. 19. Becker H, Stuifbergen A, Tinkle M. Reproductive health care experiences of women with physical disabilities: A qualitative study. Arch Phys Med Rehabil 1997;78:S26-533. 20. Nosek MA, Young ME, Rintala DH, Howland CA, Foley CC, Bennett JL, et al. Barriers to reproductive health
195.e1
V
O L U M E
5 5
●
N
U M B E R
4
N
U R S I N G
21. 22.
23.
24. 25. 26. 27.
28.
29.
30.
31.
32.
33.
34.
35.
36.
37.
38.
39.
40.
O
maintenance among women with physical disabilities. J Womens Health 1995;4:505-18. Lillestø B. Violation in caring for the physically disabled. West J Nurs Res 1997;19;282-96. Nosek MA, Howland CA, Rintala DH, Young ME, Chanpong GF, et al. National Study of Women with Physical Disabilities: Final Report. Houston, TX: Center for Research on Women with Disabilities; 1997. Scullion P. Conceptualizing disability in nursing: Some evidence from students and their teachers. J Adv Nurs 1999;29:648-57. Scullion P. Enabling disabled people: Responsibilities of nurse education. Brit J Nurs 2000;9:1010-15. Northway R. Disability and oppression: Some implications for nurses and nursing. J Adv Nurs 1997;26:736-43. Thierry JM. Promoting the health and wellness of women with disabilities. J Womens Health 1998;7:505-7. Thierry JM. Increasing breast and cervical cancer screening among women with disabilities. J Womens Health Gend Based Med 2000;9:9-12. Thierry JM, Cyril JK. Health of women with disabilities: From data to action. In: Welner SL, Haseltine F, editors. Welner’s Guide to the Care of Women with Disabilities. Philadelphia, PA: Lippincott Williams and Wilkins; 2004. Iezzoni LI, McCarthy EP, Davis RB, Siebens H, et al. Mobility impairments and use of screening and preventive services. Am J Public Health 2000;90:955-61. Iezzoni LI, McCarthy EP, Davis RB, Harris-David L, O’Day B, et al. Use of screening and preventive services among women with disabilities. Am J Med Qual 2001;16:135-44. Chan L, Doctor JN, MacLehose RF, Lawson H, Rosenblatt RA, Baldwin LM, Jha A, et al. Do Medicare patients with disabilities receive preventive services? A population-based study. Arch Phys Med Rehabil 1999;80:642-6. Cheng E, Myers L, Wolf S, Shatin D, Cui XP, Ellison G, Belin T, Vickrey B, et al. Mobility impairments and use of preventive services in women with multiple sclerosis: Observational study. BMJ 2001;323:986-9. Nosek MA, Howland CA. Breast and cervical cancer screening among women with physical disabilities. Arch Phys Med Rehabil 1997;78:S39-S44. Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil 2004;85:749-57. Veltman A, Stewart DE, Tardif GS, Branigan M, et al. Perceptions of primary health care services among people with physical disabilities—part 1: access issues. MedGenMed 2001;3:18. Smeltzer SC, Zimmerman V, Capriotti T. Bone mineral density and osteoporosis risks in women with disabilities. Arch Phys Med Rehab 2005;86;582-6. Smeltzer SC. Preventive health screening for breast and cervical cancer and osteoporosis in women with physical disabilities. Fam Commu Health 2006;29:35S-43S. Kopac CA, Fritz J, Holt RA. Gynecologic and reproductive services for women with developmental disabilities. Clinical Excellence for Nurse Practitioners 2(2):88-95, 1998 Mar. Coyle CP, Santiago MC. Healthcare utilization among women with physical disabilities. Medscape Womens Health 2002;7:2. Smeltzer SC, Sharts-Hopko NC, Ott B, Zimmerman V, Duffin J, Perspectives of women with disabilities on reach-
U T L O O K
Surgeon General’s call to action
41.
42.
43.
44.
45.
46.
47.
48.
49. 50.
51. 52.
ing those who are hard to reach. J Neurosci Nurs 2007;39:(3):163-171. Smeltzer SC. Pregnancy in women with disabilities. Journal of Obstetrical, Gynecology, and Neonatal Nursing 2007;36: (1):88-96. Smeltzer SC, Dolen MA, Robinson-Smith G, Zimmerman V, et al. Integration of disability-related content in nursing curricula. Nurs Educ Perspect 2005;26:210-16 Marks B. Cultural competence revisited: Nursing students with disabilities. Journal of Nursing Education 46:(2):70-4, 2007 Feb Lindgren CL, Oermann MH. Effects of an educational intervention on students’ attitudes toward the disabled. J Nurs Ed 1993;32:121-6. Oermann MH, Lindgren CL. An educational program’s effects on students attitudes toward people with disabilities: A 1-year follow-up. Rehabil Nurs 1995;20:6-10. Thompson TLC, Emrich K, Moore G. The effect of curriculum on the attitudes of nursing students toward disability. Rehabil Nurs 2003;28:27-30, 35. Richardson M. Addressing barriers: Disabled rights and the implications for nursing of the social construct of disability. J Adv Nurs 1997;25:1269-75. Nolan M, Nolan J. Rehabilitation, chronic illness and disability: The missing elements in nurse education. J Adv Nurs 1999;29:958-66. Shakespeare T, Watson N. Defending the social model. Disabil Soc 1997;12:293-300. Iezzoni LI. When walking fails: Mobility problems of adults with chronic conditions. Berkeley, CA, New York, NY: University of California Press and the Milbank Memorial Fund; 2003. Goodall CJ. Is disability any business of nurse education? Nurse Ed Today 1995;15:323-7. French S. Simulation exercises in disability awareness training. Disabil Handicap Soc 1992;7:257-66.
Smeltzer 53. Tremblay M, Tryssenaar J, Clark K, Richardson J, Watt S, Rosenthal C, et al. Aging with a preexisting disability: Developing a bibliography and curriculum guide for health and social science educators. Edu Gerontol 1997;23:567-79. 54. Sowers J, Smith MR. Nursing faculty members’ perceptions, knowledge, and concerns about students with disabilities. J Nurs Ed 2004;42:213-8. 55. Evans BC. Nursing education for students with disabilities: Our students, teachers. Ann Rev Nurs Ed 2005: 3-22. 56. Sowers J, Smith MR. Evaluation of the effects of an inservice training program on nursing faculty members’ perceptions, knowledge, and concerns about students with disabilities. J Nurs Ed 2004;43:248-52. 57. Stuifbergen AK, Seraphine A, Harrison T, Adachi E, et al. An explanatory model of health promotion and quality of life for persons with post-polio syndrome. Soc Sci Med 2005; 60:383-93. 58. Stuifbergen AK, Harrison TC, Becker H, Carter P, et al. Adaptation of a wellness intervention for women with chronic disabling conditions. J Holistic Nurs 2004;22:1231. 59. Stuifbergen AK. Secondary conditions and life satisfaction among polio survivors. Rehabil Nurs 2005;30:173-9. 60. Harrison T, Stuifbergen A, Adachi E, Becker H, et al. Marriage, impairment, and acceptance in persons with multiple sclerosis. West J Nurs Res 2004;26:266-85. 61. Sharts-Hopko NC, Smeltzer S. Perceptions of women with multiple sclerosis about osteoporosis follow-up. J Neurosci Nurs 2004;36:189-94,199. 62. Sharts-Hopko NC, Sullivan MP. Obesity as a confounding health factor among women with mobility impairment. J Am Acad Nurse Pract 2003;15:438-43. 63. Smeltzer SC, Zimmerman V. Usefulness of the SCORE Index as a predictor of osteoporosis in women with disabilities. Ortho Nurs 2005;24:33-9.
J
U L Y
/ A
U G U S T
N
U R S I N G
O
U T L O O K
195.e2