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Culturally Competent Care Complements Interactions with People with Disabilities (CE)
This article describes the concept of disability as a culture, discusses key components of cross-cultural communication with people with disabilities, and identifies the key elements of providing culturally competent care to people with disabilities. To gain an understanding of cultural competence, it is important to understand the concepts and definitions of culture, disability, and competence. The World Health Organization classification of functioning, disability, and health will be used as the theoretical model in the discussion on disability. J. Campinha-Bacote's Cultural Competent Model of Care is used as the theoretical model for the discussion on cultural competence.
When one thinks of cultural diversity, ethnic minorities immediately come to mind. That in itself is a bias because one of the largest minority groups is people with disabilities, who number 52.6 million in the United States (McColl, 2005). People with disabilities have a distinct culture of shared beliefs and concerns. It is important for nurses to recognize the disability culture so they can provide comprehensive and individualized care. This article describes the concept of disability as a culture, discusses key components of cross-cultural communication with people with disabilities, and identifies the key elements of providing culturally competent care to people with disabilities.
Providing culturally competent care ensures sensitivity, respect, and understanding, which enables clinicians to best understand and support patients' needs and make individualized and appropriate treatment decisions. Each person has his or her own value system and bias. To become culturally competent, one must acknowledge and understand their acquired bias. Cultural competence is a developmental process that evolves over an extended period. Both people and organizations have various levels of awareness, knowledge, and skills along the cultural competence continuum (Cross, Bazron, Dennis, & Isaacs, 1989). According to the American Nurses Association position statement on cultural diversity and nursing practice, “knowledge and skills related to cultural diversity can strengthen and broaden healthcare delivery. A culturally competent nurse considers specific cultural factors that impact individual clients and recognizes that intracultural variation means that each client must be assessed for individual cultural differences. It is essential that nurses understand how cultural groups define health and illness” (1991). Culturally competent care acknowledges and understands cultural diversity in the clinical setting, respects health beliefs and practices, and values cross-cultural communication. To understand cultural competence, one must understand the concepts and definitions of culture, disability, and competence. The World Health Organization (WHO) classification of functioning, disability, and health will be used as the theoretical model in the discussion on disability. The Cultural Competent Model of Care will be used as the theoretical model on cultural competence (Campinha-Bacote, 2002).
Healthcare agencies define disability differently. The Americans with Disabilities Act (ADA), the U.S. Social Security Administration, the Centers for Disease Control and Prevention (CDC), and the WHO all have different definitions of disability. In addition, publications such as the Guides to the Evaluation of Permanent Impairment, the International Classification of Diseases, and the Diagnostic and Statistical Manual of Mental Disorders (DSM) contain unique definitions. Each agency requires a definition for purposes specific to their mission or charge. For example, the purpose of the ADA is to protect the rights of people with disabilities. The ADA provides a legal definition to identify people protected under the act. The U.S. Social Security Administration defines disability for the purpose of determining eligibility for assistance, such as Medicaid or welfare. The CDC defines disability in terms of an epidemiological model for disease management. The WHO’s conceptual model can be used universally to define disability and communicate statistics and demographic data about people with disabilities on a global scale. The Guides to the Evaluation of Permanent Impairment defines disability to determine the needs of people with disabilities for the purpose of life planning. The International Classification of Functioning, Disability and Health (ICF) provides a standardized language and framework that defines disability for the WHO. The DSM provides definitions and explanations of mental disorders.
Although these agencies and pubications provide definitions of disability for specific purposes, the variety and differences of these definitions can be confusing. A more simplified version can be defined in terms of limitations that may affect one or more activities and affect physical, sensory, cognitive, or mental abilities (Lutz & Bowers, 2003). According to the ADA, disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such an individual; a record of such an impairment; or being regarded as having such an impairment (ADA, 1990, chap. 126, sect. 12102). The ICF provides standard language and a framework for the description of health and health-related states. The ICF definition is used by the WHO to classify disability and was approved by the WHO in May 2001. Before this, the WHO used a working definition established in 1986 that focused on impairment, function, disability, and handicap. The revised model focuses on body functions and structures, activities, and participation in life (Figure 1).
Body functions and structures that are related to physiological and physical aspects of disability include reduced mobility of the hip, knee, and ankle joint; hemiplegia, paraplegia, or tetraplegia; spasticity of the arm or leg muscles; reduced muscle endurance; stroke; or damage to the parietal lobe. Affected activities include walking short and long distances on uneven surfaces, going up and down stairs and around obstacles with a cane; propelling a wheelchair; and lifting, pulling, and pushing in both the home and community.
Participation in life activities is the true goal of rehabilitation nursing. Rehabilitation focuses on returning a person to participation in the life activities that are important to him or her, such as maintaining a full-time job; assisting a child with personal care needs; maintaining and forming relationships with friends, children, parents, and siblings; going to football games with friends; or attending church. The WHO model also includes two important contextual factors—environmental and personal (2002). Environmental factors include accessibility, which necessitates the availablity of accessible buildings, sidewalks, and transportation. Environmental factors also include social attitudes toward people with disabilities. In areas in which there is a high degree of acceptance and tolerance for people with disabilities, this population has a great deal of support in the community and in their vocations. In the United States, the focus on the ADA and mainstreaming in schools has increased acceptance for people with disabilities. In some Eastern European countries, Japan, and China, people with disabilities may be considered a burden on the family and nonproductive members of society. In these countries, the rights of people with disabilities are not protected and full participation in a community and vocation is difficult to achieve. Personal factors encompass an individual’s ability to cope and adapt to disability.
When one thinks of minorities, ethnic minorities typically come to mind, however, people with disabilities comprise the largest minority in the United States. More than 52.6 million people with disabilities comprise 20% of the population. Various Latin-American groups comprise 12.5% of the population, African-Americans comprise 12.3%, and Asians comprise 3.6% (McColl, 2005).
The U.S. Census Bureau (2000) ranks the order of disabilities by type for people 16–64 years of age and those 65 years of age and older. Employment disability is the most common disability for people under 65 years of age, followed by difficulty going outside the home, physical disabilities, mental impairments, sensory impairments, and self-care deficits. There is a significant difference in disability prevalence among people age 16–64 compared to those 65 years of age or older (U.S. Census Bureau). The prevalence of disability is more than twice as high for people age 65 and older in all disability groupings. For physical disabilities, the prevalence is six times higher for people older than age 65. Baby boomers are one of the largest population clusters, and they will be nearing age 65 by the end of this decade. The fastest-growing age group is people age 85 and older. The need for rehabilitation services will reach a peak as access to rehabilitation is limited by such forces as the 75% (now 60%) rule and government cost-containment strategies such as local care determinations by fiscal intermediaries. This will become as significant a healthcare crisis as the nursing shortage.
Culture is learned beliefs, values, behaviors, attitudes, and customs shared by a group. Culture implies the integrated pattern of human behavior that includes thought; communication; actions; customs; beliefs; values; and institutions of a racial, minority, or social group. Competence implies having the capacity to function effectively (Koch, 2005). People with a disability have a distinct culture of shared experiences and healthcare needs. The culture of disability is distinct from all other cultures because disability is an “equal opportunity” and can happen to anyone at any point in their lives. Most people are not born with a disability. People with disabilities are a diverse group that represents all human characteristics, racial and ethnic backgrounds, social and economic levels, genders and ages, and sexual orientations. Although disability is an equal opportunity, prevalence is not equally distributed among all ethnic and age groups.The highest prevalence of disability is seen in the African-American population, at 12.3% for all age groups, and more than 50% for the 65-and-older age group. For all ethnic groups, 20% of the working-age population is disabled, 6.5% of noninstitutionalized children are disabled, and 12% of people ages 15–21 report disabilities (Figure 2).
Culturally Competent Care
To understand cultural competence, it is helpful for nurses to have a theoretical model to use in professional practice. The process model of cultural competence includes five constructs or components that illustrate the dynamics of cultural competence: cultural awareness, cultural knowledge, cultural skill, cultural encounter, and cultural desire (Campinha-Bacote, 2002).
The ability to self-examine one’s own biases toward other cultures is the process of cultural awareness, which involves a thorough and honest exploration of one’s cultural heritage, upbringing, and professional background. Healthcare professionals must seek information about different cultural and ethnic groups to develop cultural knowledge (Goode, 2001). This process includes understanding biological variations and the effects of medications and disease processes in different ethnic groups. The ability to perform a cultural assessment to develop an individualized and holistic physical examination is known as cultural skill. A cultural encounter occurs when a healthcare professional personally engages with patients from different ethnic and cultural backgrounds. These personal experiences help broaden healthcare professionals’ understanding and ability to meet the needs of people from other cultures. Cultural desire is perhaps the most important element of cultural competence. A person must want to learn about and understand people from the context of their cultural heritage. According to Campinha-Bacote, cultural desire is the spiritual and pivotal construct of cultural competence (2001). This is not a linear model, and the five constructs are interactive and create a synergy of attributes that express the development of cultural competence (Figure 3).
At the organizational level, cultural competence requires a multifaceted approach. Healthcare facilities must have the capacity to value diversity, which begins with a top-down approach because administrative support is imperative to success (Cohen & Goode, 2000). Competence at the facility level begins with organizational assessment, followed by a plan to manage the dynamics of difference and acquire cultural knowledge of people with disabilities. The cultural competence plan should include the development of policies, formal committees, community representation, and understanding of bias at the clinical level. Because cultural competence is a learned behavior, facilities must establish a training curriculum that includes a provision for sensitivity awareness.
Misconceptions regarding people with disabilities are supported by misinformation, the isolation of people with disabilities, and personal bias. Because bias and misconceptions create barriers to culturally competent care, it is important for healthcare providers to debunk these myths (Table 1).
People with disabilities encounter many disparities. For example, in examining levels of education attainment, 25% of U.S. citizens with a disability do not complete high school, compared with 11% of those without a disability. Only 9.4% of people with a severe disability are college graduates, compared with 28.5% of people without a disability (Kaiser Foundation Rehabilitation Center, 2004). There also are disparities regarding employment. Only 32% of Americans with a disability ages 18–64 are working, compared to 81% of people without disabilities. Among people who use a wheelchair, 78% are unemployed (Kaiser Foundation Rehabilitation Center). This is perhaps one of the most disturbing statistics regarding people with disabilities. There is no rationale in the literature to explain why so many people with disabilities, particularly those in wheelchairs, are unemployed, and further study is needed.
Access to Health Care
Low levels of employment among people with disabilities correlate with their lack of employer-based healthcare coverage. One in five people with disabilities who are 25–64 do not have health insurance (Administration on Aging, Department of Health and Human Services, 2001). Most disabled people lack commercial healthcare coverage and are covered by Medicaid. They face additional access barriers to healthcare services, including transportation challenges, accessibility of examination tables, accessibility of communication systems, time constraints, and cultural barriers. Managed-care systems may be less likely to offer access to rehabilitation services. Primary care physicians may be unfamiliar with rehabilitation medicine and other rehabilitation services. People with disabilites are subjected to fragmented care that is less coordinated and missing case management. Healthcare professionals can also present attitudinal barriers.
People with disabilities rate their quality of life as average or better than average. For example, 86% of people with tetraplegia rate their quality of life as average or better than average; however, only 17% of emergency department doctors and other providers believe this rating would apply to them if similarly disabled (Koch, 2005). To eliminate these disparities, healthcare professionals must promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities.
Disability laws emerged in the late 1970s beginning with the Rehabilitation Act, which provided people with disabilities the rights to access the goods and services that were available to nondisabled people, including health care. The Individuals with Disabilities Education Act required local school districts to provide evaluation, eligibility determinations, individual education plans, and appropriate placement and accommodations until high school graduation or the age of 22. Culturally and linguistically appropriate services and standards required healthcare organizations to provide interpreter services for deaf and hearing-impaired patients. The ADA (1990) prohibits discrimination on the basis of disability and ensures equal opportunities in education, state and local government services, public accommodations, transportation, and telecommunications.
Implications for Providers
General communication guidelines begin with the use of person-first language, which entails avoiding the use of labels, such as a diagnosis, and referring to an individual as a person first, followed by a descriptor if necessary. Instead of referring to a person as a “stroke victim,” refer to him or her as a person who has experienced a stroke. Practitioners should consider the patient the expert regarding the disabling condition, especially when the condition has been longstanding. It is important for practitioners to identify themselves and always explain what they are going to do with the patient. Always address the person by name and be sure to avoid assumptions. It is best to let a person ask for assistance. If he or she appears to need assistance but does not ask for help, then ask whether he or she needs help before providing assistance. When working with people with disabilities, use language that reflects positive views and attitudes relating to disabling impairments. Figure 4 indicates acceptable and unacceptable language regarding people with disabilities.
When working with people with visual impairments, it is important to identify yourself and others. Use the auditory mode of communication and limit the use of nonverbal communication and gestures. Provide written materials in appropriately large print or in Braille, depending on the person’s preference. Respect personal space, which includes accommodating assist dogs. Assist dogs are not pets and should not be treated as pets, so do not distract these animals while they are working. When working with people with hearing impairments, ask how you can facilitate communication. Provide materials in written form. Make sure to have interpreter services for American sign language or other sign language available in advance. When working with people with speech impairments, allow extra time for communication. Do not pretend to understand if you are unsure what a person is saying, and take time to restate what was said to make sure you understood what was communicated. When working with people with cognitive disabilities, do not make assumptions about their level of understanding and ability to process information. It is important to minimize distractions and prevent overstimulation or distractions. Be aware that people with cognitive impairments might appear to understand what you are trying to communicate when in fact they do not. It is helpful to have the patient restate information to verify his or her level of understanding. When working with people with physical impairments, make sure they have adequate physical access. Also be sure to respect personal space, which includes space occupied by wheelchairs and assistive devices. Do not propel a person’s wheelchair unless you are asked to do so.
Theoretical models provide a framework with which nurses can think about assessing, planning, implementing, and evaluating patient care. The WHO model on disability looks at the global outcome or goal of the rehabilitation process, which is participation in life activities, and helps nurses focus on the adaptations patients must make to participate in activities that are significant to them. If travel is important to a patient, helping him or her gain access to transportation would be a nursing intervention.
Campinha-Bacote’s cultural awareness model can help nurses assess their cultural competency and gain insight into the dynamics of cultural competence. Using this model, a nurse can gain a better understanding of his or her cultural competence strengths and needs. Both models help create a holistic approach to caring for patients and families. As these models are used in practice more consistently, additional evidence will be obtained for their efficacy and further development.
About the Author
Paul Nathenson, MPA RN CRRN HN-BC, is vice president of corporate planning and long-term care at Madonna Rehabilitation Hospital in Lincoln, NE. Address correspondence to him at firstname.lastname@example.org.
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