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The Experience of Deafened Adults: Implications for Rehabilitative Services.


This study explored the psychological and social effects of becoming deaf as an adolescent or adult and the adequacy of rehabilitation services offered to such individuals. Qualitative interviews were conducted with a sample of eight deafened adults in the Province of Ontario, Canada. The results indicated that medical interventions (for example, audiometric testing, hearing aid provision, and cochlear implantation) were relied on exclusively as rehabilitation services for the deafened adults. None of the study participants were referred to individual, family, or group counseling by their physicians or hearing health services providers, despite the many negative effects of becoming deaf that participants described. This gap in service makes it apparent that the rehabilitation system for adventitious deafness needs the involvement of counselors and social workers to better ensure that the psychosocial needs of clients are addressed.

For the purposes of this article "adventitious deafness" (Benderly, 1980) is the term used for profound hearing loss acquired after having learned speech and language, rather than deafness from birth. Other common terms in the literature for this phenomenon include late deafness (Rothschild & Kampfe, 1997), postvocational deafness (Schein & Delk, 1974), and sudden severe deafness (Levine, 1981). The impetus for this study is the conviction that adventitious deafness is a social problem that is underrecognized, underresearched, and undertreated.

The criteria for being defined as a deafened person vary, but are always conservative. Usually, this requires a loss of 70 decibels or greater in the better ear, which makes audition useless for understanding oral communication (Rothschild & Kampfe, 1997). Using the definition "at best, can hear and understand words shouted in the better ear," the 1990 and 1991 Health Interview Surveys of the National Center for Health Statistics yielded the estimate that about .5 percent of the population ages three years and older are deaf (Ries, 1994). This amounts to about 1.15 million deaf people over the age of two in the United States (Ries). What is not commonly recognized, however, is that approximately three of four deaf people lose their hearing after the age of 19 (Ries; Schein & Delk, 1974). Thus, there are close to 1 million adventitiously deafened adults in the United States, and they represent the vast majority (75 percent) of deaf people.

A recent survey (Boone & Scherich, 1995) of 348 members of the Association of Late-Deafened Adults (ALDA) in the United States documented some of the causes of adventitious deafness. Forty percent of respondents reported medical causes (for example, illnesses such as meningitis or Meniere's syndrome, viruses, or reactions to medication), l3 percent reported surgical causes (for example, complete or partial removal of the auditory nerves to alleviate another condition, such as neurofibromatosis Type-2 or acoustic neuroma), 5 percent reported traumatic injury (such as automobile or workplace accidents or near fatal drowning) as the cause, and 42 percent reported progressive hearing loss that was mostly unexplained (idiopathic). This latter category of progressive hearing loss can sometimes be attributed to heredity, aging, or overexposure to excessive noise; however, the causes usually remain unknown. Most people who experience such progressive hearing loss detect a mild decline in hearing ability in adolescenc e, which deteriorates to profound deafness by middle adulthood. Although the results of this study should be viewed cautiously because of the small and nonrandom sample, the study provides important information about the various causes of adventitious deafness.

The psychological and social effect of adventitious hearing loss can be devastating. In addition to the general difficulty of living without hearing, compared with the experience of those who are congenitally or prelingually deafened, deafness is not ingrained into the core identity of people who become deafened as adults; they are confronted with the loss of their self-image (David & Trehub, 1989). Furthermore, people who experience profound hearing loss after being socialized as a hearing person must face the task of learning a new way to cope with the world without dependence on the auditory sense (David & Trehub).

Luey (1980) reported that deafened adults often feel as if they are stuck between the deaf and hearing worlds. They no longer can function effectively among hearing people as they were accustomed to doing. Because speech reading is not an easily acquired skill, a deafened person must resort to guessing to fill the gaps of dialogue. Many deafened people have reported that social gaffes in the form of inappropriate responses to the comments and questions of others are common. The resulting embarrassment and humiliation leads the deafened person to withdraw from social settings and limits the opportunity to discover positive coping strategies.

Impediments to convenient conversation with people from their premorbid life often result in damaged relationships--especially with family members (Kyle & Wood, 1987). Glass and Elliott (1992) reported that people who experience severe-to-profound hearing losses have reported higher divorce rates than the nondisabled population. Even when marriages remained intact, the structure and quality of relationships in the family often deteriorated (Kyle & Wood; Meadow-Orlans, 1985). This is attributed to the added stress placed on the nondisabled spouses, who often take on additional responsibilities to compensate for their partner's disability (Goffman, 1963).

Because acquired deafness is a well-studied subject in the medical and audiological professions, it might be natural to assume that the deafness rehabilitation system would be well-equipped to provide a range of services. Unfortunately, such research has focused narrowly on restoring deafened individuals to preloss functioning through medical and audiological intervention. However, documented reports from people who have experienced profound hearing loss indicate that this approach does not address the significant psychosocial stressors experienced by deafened people. The repetitive theme found in surveys (David & Trehub, 1989), personal interviews (Glass & Elliott, 1992), and focus groups (Aguayo & Avena, 1994) with deafened adults is that the rehabilitation they typically receive does not help them cope. A common refrain from the respondents in these studies is that the professionals who were responsible for their care did not understand the complex repercussions of the condition and offered services more a ppropriate for either congenitally deaf people or people with mild hearing losses.

Although some hearing health professionals have argued that denial of the hearing loss and social withdrawal delay the entry of deafened adults into rehabilitation and prevent them from obtaining available services (Glass & Elliott, 1992; Meadow-Orlan, 1985), it seems clear that a gap exists in rehabilitation services. Santos (1995) noted that the deafness rehabilitative system is geared more toward early intervention for congenitally deaf children than toward services for individuals who become deaf as adults. Luey (1980, 1994) noted that even social workers often simply refer deafened clients to physicians and audiologists, apparently unaware that these professions are not equipped to recognize or deal with the psychosocial effects of profound hearing loss.

The limited literature on adventitious deafness has identified in a general sense the inadequacy of the rehabilitative system for this condition. It has not, however, documented in detail the rehabilitative care that deafened people receive after experiencing a profound hearing loss. Similarly, the literature lacks in-depth accounts from deafened adults about the psychological and social effect of adventitious deafness. This study addresses both of these issues.



A request for volunteers for this study was mailed to the 25 Ontario residents who subscribed to a newsletter written for deafened people in Canada. A demographic survey was enclosed (along with a self-addressed stamped envelope) to aid in the selection of a purposive sample. Purposive samples are often used to ensure the inclusion of a range of affected individuals (Erlandson, Harris, Skipper, & Allen, 1993). For this study, we felt it was important to obtain diversity within the sample with regard to cause of deafness, age at onset, present age, gender, and geographical location (that is, rural or urban).

Eight of the 10 individuals who responded affirmatively to the request for participation in the study were selected for the sample. The sample contained an even gender distribution, and all respondents were white. Four respondents resided in a major city, two in medium sized cities, and two in rural areas. The mean age of participants was 49 years (range = 31--68 years). The mean age of the participants at the onset of hearing loss was 32 years (range = 13--40 years). The mean number of years with a hearing loss was 17 (range = 2--39 years). Three causes of deafness-medical (two respondents), surgical (three respondents), and progressive-idiopathic (three respondents)--were represented in this sample. In terms of the rapidity of hearing loss, four respondents experienced gradual decline; one participant's hearing deteriorated at a rapid pace; and the remaining three experienced sudden deafness as a result of removal of the auditory nerve).

Data Collection

In-depth individual interviews were the source of data. The interviews were semistructured and an interview schedule of open-ended questions was used flexibly to explore respondents' experiences in becoming deaf and in dealing with the deafness rehabilitation system. The literature review and the first author's experience in becoming a deafened adult were used to develop the interview schedule, which was then pretested with a late-deafened adult. The first author conducted all interviews. Five respondents were interviewed in person with the help of computer-assisted real-time translation (CART) stenography. The CART stenography converted verbal dialogue into typed text that was shown on a computer monitor. This allowed respondents to read the interviewer's questions and produced a word processing record of their responses. Although the interviewer was fluent in American Sign Language (ASL), the CART stenography was necessary to compensate for the low level of sign-language skill of the respondents. The interv iews lasted approximately two hours. Because of the remote geographical location, two interviews were conducted by e-mail exchanges over a period of weeks. One interview was conducted by telephone using a telecommunication device for the deaf (TDD/TTY), which generated a visual display of questions and answers on a computer monitor.

Data Analysis

The general process of qualitative analysis used in this study was adapted from Lincoln and Guba (1985). All interviews were converted to transcript form, which the first author analyzed. Transcripts were reviewed a number of times to achieve intimate familiarity with the respondents' experiences. The data were then broken down into units, coded as themes, and sorted into categories of themes.


A major part of the original study's results included a detailed account of each respondent's experience (Aguayo, 1998). It is beyond the scope of this article to report the individual stories. This article presents an overview of the across-respondent themes related to the psychological and social effects of becoming deaf and experiences with rehabilitative services.

Psychological and Social Effects of Becoming Deaf

Three themes emerged in this first category: emotional trauma; oppression, exclusion, and isolation within the family; and general oppression, exclusion, and social isolation (Table 1).

Emotional Trauma. The respondents' accounts were extremely moving with regard to the emotional trauma that they suffered in becoming deaf and coping with ongoing deafness. Anxiety, grief, and mourning were the emotions that all respondents experienced deeply. Each respondent reported anxiety related to feelings of inadequacy, self-doubt, and uncertainty about the future. Many respondents felt bewildered when they became deaf and had fears for their personal safety. Six of the eight respondents also spoke of the anger and frustration they experienced at their inability to function "normally." Embarrassment and shame were other common feelings described in this regard.

Oppression, Exclusion, and Isolation within the Family. As would be expected, after the onset of deafness all eight participants experienced significant communication difficulties with their families. For the majority of the respondents, severe communication problems persisted and led to a sense of isolation within the family. Although six of the eight respondents learned ASL, the families of only two learned and continued to use ASL (two other families learned ASL but abandoned its use). Although the two families continued to use ASL, often they overlooked the deafened person's communication needs. All respondents reported that they felt excluded from family interaction to some degree, and five of them believed that the root cause of such neglect was familial denial of the deafness. These respondents felt that the magnitude of their hearing loss was minimized or ignored outright.

Many of the respondents reported more severe family problems. Half of the respondents reported feeling discriminated against, oppressed by, or abused by some family members. One respondent described how her family of origin taught her to conceal and feel ashamed of her deafness. Another respondent, who subsequently divorced, described how her husband was embarrassed by her deafness and would ridicule and blame her. Only one respondent described his family as consistently understanding and supportive.

General Oppression, Exclusion, and Social Isolation. All of the respondents reported social difficulties that led to increased social isolation. Respondents described how deafness caused them to feel embarrassed, fearful, inadequate, and incompetent in social situations. They also described how they frequently were neglected, shunned, or discriminated against by others. One respondent, who became deaf gradually, reported how high school peers would sometimes taunt and ridicule him. Another respondent described how she was the victim of obvious discrimination in a job competition. A third respondent noted how the awkwardness of well-intentioned friends in communicating with him made him feel uncomfortable.

Respondents reported similar reactions to, or ways of coping with, social oppression and exclusion. Many respondents learned to conceal their deafness from others or to bluff their ability to understand verbal dialogue. Also, to varying degrees, all respondents used strategies of general social withdrawal or selective avoidance of anxiety-provoking situations. These understandable coping strategies led to further social isolation.

Experiences with Rehabilitative Services

Two themes emerged with regard to experiences with rehabilitative services: the exclusive medical orientation and revolving door nature of rehabilitation services and respondents' dissatisfaction with rehabilitative services.

Exclusive Medical Orientation and Revolving Door in Rehabilitative Services. As would be expected with any physical disorder or illness, all of the respondents sought medical attention when they became aware of hearing loss. The eight respondents consulted a total of 36 health care providers. Of all the health care practitioners consulted, 33 were trained medical professionals, and three had paraprofessional medical training. Among the health care professionals were 13 family physicians; 10 ear, nose, and throat (ENT) specialists; eight audiologists; and two neurologists. The three other professionals were a hearing aid dispenser without training in audiology, an occupational therapist, and a military hearing examiner whose only hearing health training was in the operation of an audiometer to screen-test the hearing of new recruits.

Respondents went through a minimum of three stages in rehabilitative services, and most went through such stages more than once (Table 2). For some respondents, rehabilitation services may have been separated by a number of years. For example, the cochlear implantation for two respondents occurred several years after the earlier rehabilitative processes. Respondents reported several common experiences in the stages of rehabilitative services received.

Stage one of rehabilitative services primarily consisted of initial intake, assessment of the condition, and referral to a second practitioner. A general practitioner was the initial contact for all but one of the respondents. The only stage-one health care provider who was not a physician was a military paramedic who was trained to operate an audiometer.

In the second stage, services to respondents were further assessments and referrals to another health care specialist. The breakdown of service providers in this stage included 13 ENT specialists, one neurologist, and one hearing aid dispenser (who was not an audiologist).

In stage three, respondents received a total of 12 referrals to medical practitioners, five treatments, and one termination. Of the referrals, one went unconsummated at the respondent's discretion. The referrals were distributed among eight audiologists, two neurologists, one ENT specialist, and one hearing health counselor. The five treatments that were provided included one hearing aids prescription, one cochlear implantation, two surgeries, and one pharmaceutical regime.

Stage four was the most treatment-laden. The respondents received a total of nine treatments that included two surgeries (on one individual), four hearing aids prescription, one cochlear implantation, one recommendation for annual audiograms, and one provision of hearing loss resource information. Two rehabilitation processes were terminated at stage four because no treatment could remedy these respondents' hearing loss. No respondents received further treatment after stage four.

In examining the rehabilitative services experienced by the study's participants, two issues stand out. First, it is striking that no mental health professionals were involved to help address the participants' psychosocial needs. Second, for most participants the multiplicity of stages of treatment and of professionals involved conjures up the image of an ineffective, revolving door of services.

Dissatisfaction with Rehabilitation Services. Given the revolving door nature of rehabilitative services received, it is no surprise that many participants expressed dissatisfaction with the competence of the medical professionals they encountered. Participants complained about shortcomings in professional knowledge and skill, including the inability to provide correct diagnoses and the lack of knowledge about appropriate services and resources. The following quotes illustrate some of these complaints:

"The medical people didn't do me much good."

"They should have been the authorities but they didn't have the information."

"There would be nothing [in the way of referrals for social rehabilitation]...just a gaping hole where my inner ear is located"

Other dissatisfactions about the medical professionals related to poor professional manner and interpersonal sensitivity, and lack of attention to the emotional, psychological, and social effects of deafness. Participants said:

"They had kind of an attitude ... there was no empathy."

"They forgot about my feelings.

"I was told: 'Don't worry about it. Look at how well you've coped so far.' Then he [ENT] told me to find a deaf club"

Although some respondents had more positive experiences with rehabilitative services than others, overall the rehabilitation that was provided was woefully inadequate.


The participants' stories attest to the commonsense acknowledgment in the literature (David & Trehub, 1989; Glass & Elliott, 1992; Luey, 1980) that the transition to deafness after living as a hearing person is marked by emotional trauma and extensive problems in social functioning. As others (for example, Meadow-Orlans, 1985) have noted, of particular concern is that the psychosocial needs of deafened adults often are neglected or responded to inadequately, by family members.

The participants' stories also confirm accounts in the literature that rehabilitation for deafened adults often consists exclusively of medically oriented services and that counseling services to address the psychosocial needs of the individual are overlooked (Aguayo & Avena, 1994; David & Trehub, 1989; Glass & Elliott, 1992; Rothschild & Kampfe, 1997). Although medical intervention is a natural first step in rehabilitative care, clearly forgotten in the pursuit to provide a "cure" is that adventitious deafness is not only a medical condition, but also a psychosocial phenomenon. Psychosocial interventions are required when deafness and hearing loss are diagnosed-especially if the individual's hearing loss is irreversible, as was the case for all eight respondents in this study. Psychosocial interventions are particularly necessary when the irreversibility and suddenness of hearing loss can be predicted, as was the case for the three respondents for whom surgeons controlled the exact month, date, and hour that the patient would become deaf.

The rehabilitation system's neglect of the psychosocial needs of deafened adults represents a major shortcoming, as reflected in the satisfaction levels of the sample. In addition to complaints about inadequate training and knowledge, respondents were critical of insensitivity of professionals to the psychosocial effects of deafness. Respondents were clear in advocating for the various types of formal (that is, individual, family, and group) and informal (for example, individual and group peer support) interventions.

Although varying in individual competences, the medical professionals in each aspect of the respondents' rehabilitation performed as they were trained to do. The general practitioners made preliminary evaluations and referred the respondents to the appropriate specialist. This professional, either an ENT or a neurologist, used a treatment that seemed most appropriate for the services that they offered and referred the respondents to an audiologist or a rehabilitation professional. Each of these service providers offered the type of therapy consistent with their expertise. Unfortunately, the ability to assess and treat psychosocial needs fell outside the limits of their practice.

This adherence to a narrow medical rehabilitative approach to deafened adults is widespread. The respondents' stories about the shortcomings of their rehabilitative experiences were consistent across rural, small town, and large city environments. Furthermore, although this study took place in Canada, there are reasons to suspect that the results can be generalized to the United States. First, despite the differences in health care policy and funding between these countries, the training and practice of medical professionals is based on the same body of knowledge. Second, most of the studies that document deafened people's dissatisfaction with their rehabilitation were conducted in the United States (Glass & Elliott, 1992; Luey, 1980; Luey, 1994; Luey, Glass, & Elliott, 1995; MeadowOrlans, 1985; Rothschild & Kampfe, 1997).

The findings of this study support the call that others have made for social workers to become involved in rehabilitation for adventitious deafness (Luey, 1980, 1994; Luey et al., 1995). Any type of acquired disability involves a multitude of difficult changes for the affected person and his or her family. The onset of deafness marks the beginning of a transition from being a hearing person to being a deaf person, a change involving a fundamental shift in personal identity affecting all members of the immediate family. Family stress and social isolation increase, and adaptation to such changes are not smooth or painless. Social workers, as change agents, are trained to work with the relationship systems of families and the social support resources in the broader environment to support social functioning. In the case of adventitious deafness, social workers could fulfill many functions.

First, a social worker could offer grief counseling to the affected individual. Such counseling could help the deafened adult work through emotional reactions to the loss and develop coping strategies to gain a sense of control (Luey, 1980; Rothschild & Kampfe, 1997). Second, a social worker could link the deafened person to peer support to normalize the condition and reduce the social isolation that can occur. Third, a social worker could engage the family of the deafened person in counseling to help them deal with the emotional and practical effects and to prevent familial neglect or oppression of the deafened person. Acting as a mediator during family counseling sessions, the social worker could bring important issues, such as adapting to new communication and familial roles, into the open and help the family problem solve around such issues. Fourth, a social worker could act as a broker for resources and information for the deafened individual and the family. This should include mediating and advocating with the medical and audiological professionals and with the place of employment of the deafened individual.

Although social workers could fill existing gaps in the treatment of adventitious deafness, medical professionals need to be better informed about the traumatic effects of adventitious deafness so that they can show better understanding of, and support for, deafened people (David & Trehub, 1989). Studies have demonstrated that support, concern, and understanding from medical professionals can help alleviate symptoms for individuals with hearing disorders (Rothschild & Kampfe, 1997). Furthermore, hearing health professionals also should help lead the deafened individual to appropriate psychosocial rehabilitation by including referrals to social workers in their treatment plans. Toward this end, social workers should be included in interdisciplinary teams that diagnose and treat deafness.


Aguayo, M. O. (1998). Rehabilitation for deafened adults: A puzzle with missing pieces. Unpublished master's thesis, Wilfrid Laurier University, Waterloo, Ontario.

Aguayo, M. O., & Avena, K. (1994). Fact sheet on deafened adults. Unpublished manuscript.

Benderly, B. L. (1980). Dancing without music: Deafness in America. Garden City, NJ: Anchor Press/Doubleday.

Boone, S., & Scherich, D. (1995). Characteristics of ALDAns: The ALDA member survey. ALDA News. (Available from Association of Late-Deafened Adults, 1131 Lake Street, #204, Oak Park, IL 60301.)

David, M., & Trehub, S. (1989). Perspectives on deafened adults. American Annals of the Deaf 134, 200-204.

Erlandson, D. A., Harris, E. L., Skipper, B. L., & Allen, S. D. (1993). Doing naturalistic inquiry. Newbury Park, CA: Sage Publications.

Glass, L., & Elliott, H. (1992, January/February). The professionals told me what it was, but that's not enough SHHH Journal, pp. 26-28.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

Kyle, J., & Wood, J. (1987). Adjustment to acquired deafness. London: British Association of Deafened People.

Levine, E. S. (1981). The ecology of early deafness. New York: Columbia University Press.

Lincoln, Y S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage Publications.

Luey, H. S. (1980). Between worlds: The problems of deafened adults. Social Work in Health Care, 5, 253-265.

Luey, H. S. (1994). Sensory loss: A neglected issue in social work. Journal of Gerontological Social Work, 21, 213-265.

Luey, H. S., Glass, L., & Elliott, H. (1995). Hard-of-hearing or deaf: Issues of ears, language, culture, and identity. Social Work, 40, 177-182.

Meadow-Orlans, K. P. (1985). Social and psychological effects of hearing loss in adulthood: A literature review. In H. Orlans (Ed.), Adjustment to adult hearing loss (pp. 35-57). San Diego: College Hill Press.

Ries, P. W. (1994). Prevalence and characteristics of persons with hearing trouble: United States, 1990-91. National Center for Health Statistics, data from National Health Interview Survey, Series 10, Number 188.

Rothschild, M. A., & Kampfe, C. M. (1997). Issues associated with late onset deafness. JADARA, 31, 1-16.

Santos, K. D. (1995). Deafness. In R. L. Edwards (Ed.-in-Chief), Encyclopedia of social work (19th ed.) [CD-ROM]. Washington, DC: NASW Press.

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Table 1.

Phychosocial Effects of Deafness

Subtheme Quote

Emotional trauma I felt so helpless...I got caught in a
 cycle of "can'ts."
 I had to pull off the road to cry for
 half an hour [after diagnosis of
 permanent biaural deafness].
 I think that I nearly died then [on
 sudden relization of deafness
 After I went through all this,
 meaningitis, the heart attack,
 the cancer...nothing was as bad
 as the's the worst
 thing I have ever faced. The
 silence made me a different
 person. Let me put it this way,
 take the criminals' hearing away
 rather than put them to death, and
 you will see the prison they got.

Oppression, exclusion, and I felt so unimportant to them
isolation within the family [family members].
 My family did not discuss may hearing father told others it was a
 "small problem."
 I just sat there [at a family
 gathering] watching all these
 little conversations that I didn't
 hear. The family became so over-
 whelmed at times (about my deafness),
 that they forgot about my feelings.
 My husband was not patient with my
 hearing loss. He said many very mean
 thing to me. I remember him yelling
 and yelling because I didn't
 understand something he said.
 Sometime he got was

General oppression, I was left out of most cliques. Always
exclussion, and social picked last to join a [sports] team
isolation and always given the old "rolling
 eyes" whenever paired with someone
 on a class assignment.
 There is no social life.
 They [friends] were shocked that I
 would let deafness bother me.
Table 2.

Aural Rehabilitation: Stages and Treatments Received

Informant Stage One Stage Two Stage Three

A Physician Hearing aid vendor Hearing aids
 Physician ENT Audiologist

 Physician ENT Cochlear implant

B Physician ENT Audiologist
 Physician ENT Audiologist
 Physician ENT Audiologist

C Physician ENT Audiologist (c)
 Physician ENT Audiologist

D Physician ENT Neurologist
 Physician ENT Neurologist

E Examiner Termination (d)
 Physician ENT Termination (e)
 Physician ENT Audiologist

F Physician ENT Surgery

G Physician Neurologist Surgery

H Physician ENT Steroid treatment
 Hearing health counselor

Informant Stage Four

 Termination (a)

B Termination (b)
 Hearing aids
 Cochlear implant

 Hearing aids

D Surgery


 Hearing aids



 Hearing aids
 Resource info.

NOTES: Treatments are represented by shaded boxes.

(a)Cochlear implant candidacy rejected.


(c)Referral not used by respondent.

(d)Faulty audiogram assessment.

(e)ENT assumed respondent would reject hearing aid use.


adventitious deafness deafened adults late deafness rehabilitation social work
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Author:Aguayo, Miguel O.; Coady, Nick F.
Publication:Health and Social Work
Geographic Code:1USA
Date:Nov 1, 2001
Previous Article:Family Caregiving and Traumatic Brain Injury.
Next Article:Infant Mortality: A Reflection of the Quality of Health. (National Health Line).

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