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As a nation, the United States has become increasingly concerned about providing adequate health care and health care information to its citizens. This concern has been stimulated by such diverse factors as spiraling health care costs, the increase in average age of the American populace and the concomitant increase in longevity among the population, the shocking lack of access to quality health care and health care information among the poor, and the shocking lack of such wide-spread and potentially fatal health care concerns as Acquired Immunodeficiency Syndrome (AIDS). Millions of dollars are invested annually to enhance Americans' knowledge of diseases such as AIDS and sexually transmitted diseases, hypertension, and cancer. Prevention and education programs are being targeted at progressively younger-aged Americans with health care information now included in most grade school curricula.
Despite this national focus on providing health care information to all Americans, one group of individuals lacks access to most of the programs and information that have been developed in this area. Persons who are deaf, as a whole, may be unable to access basic health care information. DiPiuetro, Knight, and Sams (1981) state:
While this lack of access to basic health care information is an issue for many persons who are deaf, it is particularly acute and costly among the lower-achieving or lower-functioning segment of the deaf population. Termed "traditionally underserved persons who are deaf," these individuals are most likely to exhibit major deficits in the areas of academic achievement (particularly reading), experiential knowledge, social skills, independent living abilities, and vocational preparation. Yet it is precisely this segment of the deaf population that is most in need of adequate health care information. The incidence of secondary and tertiary disabilities in this population is higher and may therefore increase the need for quality health care information. Further, being a member of a racial and/or ethnic minority group or being of low socioeconomic status may place an individual at risk for becoming traditionally underserved (Dowhower and Long, 1992). Difficulty in accessing quality health care and health care information has been well-documented among minority group members and among the poor. The combined effects of being poor, a member of a minority group, and a lower-achieving person who is deaf create an insurmountable obstacle to obtaining health care information.
There are a number of causes that contribute to the lack of adequate health care information for traditionally underserved persons who are deaf. One of the major factors is a lack of facility with reading and writing English. Recent data (Dowhower and Long, 1992) indicate that traditionally underserved persons who are deaf possess reading abilities ranging from an inability to read to a third grade reading level. These depressed reading levels accrue from depressed language development during the early years of life, often exacervated by inadequate educational opportunities. Without sufficient reading ability, these individuals are unable to access most printed health care information. They are also unable to benefit from health care curricula that contains workbooks, practice sheets, and texts written at much higher reading levels.
In addition to reading deficits, Dowhower and Long (1992) noted the general lack of communication competence among this population. Traditionally underserved persons who are deaf are generally not able to communicate with hearing persons through the use of oral methods (speech and speechreading) nor are they often comfortable communicating with other persons who are deaf in either an English-based sign system or American Sign Language. Rather, these individuals are more likely to rely on homemade signs, gestures, or a combination of homemade signs and formally recognized signs. These communication barriers serve to isolate the traditionally underserved persons who are deaf in many ways. An obvious barrier concerns their ability to receive information through any channel that requires hearing, including radio and television. Captioning does not alleviate this problem since most traditionally underserved persons who are deaf are non-readers or poor readers. Thus, from a perspective of obtaining health care information, the popular media cannot be accessed.
These communication barriers also affect the ability of the traditionally underserved person who is deaf to learn health care concepts within the nuclear family. It is estimated that 90% of deaf children are born to hearing parents (Luterman, 1987), 88% of whom, for a myriad of reasons, do not become fluent signers (Harvey, 1982). When communication in the home is limited to gestures and homemade signs, there is virtually no opportunity to convey basic health care concepts in the manner in which they are most often initiated in the hearing family. Further, many children who are deaf attend residential schools and are physically separated from their families, resulting in yet another barrier to developing a basic knowledge of health care within the home.
Peer communication may also be stilted within this population. Communication and language deficits combine to exclude the traditionally underserved person who is deaf from gaining experiential knowledge of health care issues from peers. During the early years, deaf children may be mainstreamed into a setting where they are the only deaf children in the school. While interpreters may be provided for classes, they are not traditionally available to facilitate peer interaction in the school setting. This communication barrier excludes the deaf child from gaining the types of information that are normally shared among classmates. At the adult level, the traditionally underserved person who is deaf may lack the communication and linguistic skills to interact with both deaf and hearing peers. The resultant isolation further inhibits the acquisition of all types of information including health care information.
While recognizing the need for health care education in deaf education curricula, the educational system may fail to provide some deaf children with needed information. Emphasis may be placed, understandably, on developing linguistic and communication skills, leaving little time for such topics as health care education. Some students who are mainstreamed may be unable to benefit from curricula designed to teach health care concepts to hearing students. Although interpreters may be provided, some students may be hampered in their learning efforts by limited language skills and experiential deficits.
Finally, as previously noted, members of ethnic and racial minorities and individuals of low socioeconomic status may be at increased risk for becoming traditionally underserved ( Dowhower & Long, 1992). Health care knowledge in general is depressed among these groups, as noted in the report of the Secretary's Task Force on Black and Minority Health (1985), which states that "minority populations may be less knowledgeable or aware about some specific health problem areas than nonminorities" (p. 9). Specifically, it is noted that African Americans tend to underestimate the prevalence of cancer, give less credence to warning signs, get fewer screening tests, and are diagnosed at later stages of cancer than nonminorities. Similarly, Hispanic women have less information about breast cancer than do nonminority women. Hypertensive Japanese women and younger Japanese men (18 to 49) are less aware of their hypertension than are nonminority subgroups. Among Mexican Americans, cultural attitudes regarding obesity and diet are often barriers to achieving weight control. All of these factors, then, combine with factors specifically related to deafness to decrease the likelihood that persons who are deaf and members of minority groups will receive adequate information on health care.
The importance of providing quality health care education to traditionally underserved persons who are deaf is obvious. While prevalence rates are not available yet for this specific subpopulation, Schein and Delk (1974) estimated that there were approximately 2,000,000 prelingually (before the age of three) deaf people living in the United States. Using conservative estimates, between one-third and one-half of this group could be expected to fall within the classification of traditionally underserved. As such, between 700,000 to 1,000,000 Americans may now be at particular risk. Without adequate health care information traditionally underserved persons who are deaf are at risk for developing serious health problems. These health problems result in increased costs to society through direct medical costs, lost wages, and an increased reliance on the social service system. For the individual and his or her family, the costs can be measured in terms of decreased quality of life and shortened life span.