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Deafness and HIV/AIDS: a systematic review of the literature a
Jill Hanass-Hancock & Loveness Satande
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Health Economics and HIV/AIDS Research Division (HEARD) , University of KwaZuluNatal , Westville Campus, J-Block, Durban, 4041, South Africa Published online: 17 Sep 2010.
To cite this article: Jill Hanass-Hancock & Loveness Satande (2010) Deafness and HIV/AIDS: a systematic review of the literature, African Journal of AIDS Research, 9:2, 187-192, DOI: 10.2989/16085906.2010.517488 To link to this article: http://dx.doi.org/10.2989/16085906.2010.517488
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ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2010.517488
Deafness and HIV/AIDS: a systematic review of the literature Jill Hanass-Hancock* and Loveness Satande
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Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Westville Campus, J-Block, Durban 4041, South Africa *Corresponding author, e-mail: [email protected] A systematic review of the literature focused on empirical work on deafness and HIV/AIDS published during the past decade. The review reveals that deaf people are vulnerable to contracting HIV and might lack access to HIV/ AIDS information, testing and treatment. Three studies that were located through this review included prevalence data on disability and HIV. These indicated that deaf people are as likely, if not twice as likely, to be infected with HIV. The data also reveal that although some research has focused on HIV/AIDS knowledge among deaf people, this might not be the main area of concern in relation to HIV risk for this population. The available research more often points to increased instances of multiple partners, sexual abuse and earlier sexual debut, and, in some contexts, decreased use of condoms. These factors might explain increased risk of HIV infection for the deaf population. Additionally, the review elaborates on the geographical and methodological focuses of past research and identifies gaps, strengths and weaknesses in this body of literature. Keywords: disabilities, health knowledge, HIV prevention, risk identification, southern Africa
Introduction About 10% of the world’s population is estimated to be disabled (Mont, 2007; UNAIDS, 2009). Although HIV risk among people with disabilities has been acknowledged, little is known about these risks. This review focuses on the effects of HIV and AIDS on deaf people in order to investigate current knowledge and the gaps in the field with regard to the hypotheses that deaf people, in comparison to able-bodied people: a) are more vulnerable to HIV infection, b) have less HIV/AIDS knowledge, and c) have less access to HIV-prevention services and interventions (see Groce, 2004; Bisol, 2008). Organisations such as ‘AIDS Ahead’ in the United Kingdom and ‘Liverpool VCT, Care and Treatment’ in Kenya and their initiatives for the deaf do address these issues. However, to date, research on deafness and HIV/AIDS has been limited and particularly scarce in southern Africa. It is still unclear how severely the deaf population may be affected by HIV and AIDS. It is generally believed that many deaf people and those who are hearing impaired are particularly vulnerable to HIV infection because of communication difficulties and lower levels of access to health-related information and services (Peinkofer, 1994; Groce, Yousafzai & Van der Maas, 2007). Communication problems are thought to emanate from language barriers because the use of sign language is not a fluent communication mode within the wider population (Stevens, 1998). Furthermore, while the deaf community generally has developed its own culture and informal communication channels, the concern is that this does not obviate the risk of myths and misinformation about HIV and AIDS (Woodroffe, Gorenflo, Meador
& Zazove, 1998; Gaskins, 1999; Heuttel & Rothstein, 2001; Bat-Chava, Martin & Kosciw, 2005; Groce, Yousafzai, Dlamini & Wirz, 2005). A global survey on disability in the context of HIV and AIDS suggests that people with disabilities, including deaf people, might be at greater risk of contracting HIV infection (Groce et al., 2005). The Health Resources and Services Administration (HRSA) in the United States has asserted that the prevalence of HIV among deaf and hearingimpaired people is greater than among the general population (HRSA Care Action, 2001). For instance, 10% of the population in the United States is deaf or hearing-impaired (Winningham, 2008), and in 2001 the HRSA estimated that 8 000 to 40 000 of this group were infected with HIV. This estimate expresses a similar claim made by Groce et al. (2005) in the world survey. In Africa, such estimates are not available. This literature review provides an overview of the epidemiological drivers and trends in HIV infections among deaf people, including historical, geographical and thematic factors, as well as the methodological strengths and weaknesses in the body of research on this topic to date. Methods Search strategy Twenty-two electronic databases were searched. The data was collected between January and May 2009 from the following: SAGE, AIDSLINE, JSTOR, AJOL, Anthropology Index, Cambridge Online Journals, EBSCOhost, iLink OPAC, ProQuest, Sabinet, Science Direct, Elsevier, ISI, Web of Science Social Science Citation Index, Wilson Web
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Education, Wilson Web Humanities, PubMed, Quarterly Index of African Periodical Literature, Psychology Journals, Social Science Citation Index, SOURCE, and the University of KwaZulu-Natal Federated Search as well as libraries of agencies involved in disability work (e.g. Disabled People International [DPI], Africa Campaign on disability and HIV). Relevant documents from conferences held since 2000 were also reviewed. Reference is made to World AIDS Conferences, African AIDS conferences and two international symposia focusing on HIV/AIDS and disability. In addition, unpublished and ongoing studies were accessed via the Africa-wide ‘Disability and HIV/AIDS’ network of the Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal in Durban, South Africa. The search was restricted to studies that included both HIV/AIDS and deafness. Search terms for the search string were identified through MeSH. Common synonyms for HIV, AIDS, and deafness and its different forms were identified (total number 24) and then entered into various search engines. The final sample of 17 included only studies that used empirical methods (see Fig. 1), and the review captured only literature written in English. The research methods, the targeted population (gender and age), and geographical distribution were investigated in the final analysis of the articles reviewed. Excel software was used to assist the analysis. A statistical meta-analysis was difficult to conduct as the data collected involved diverse areas; hence, articles were analysed using content analysis. As some of the research had not yet been published, this review cannot make any assumptions about possible bias in individual research papers. Also, at the time of the review the authors were unable to access publications of the British Deaf Association (due to renovations at the association’s offices). Results Research in the area of disability in the context of HIV and AIDS has increased in recent years (Nixon & HanassHancock, 2009) and data on people with hearing impairments or deafness can be found in studies that include more than one disability type. Deafness has received the most attention of all disability categories to date (HanassHancock, 2009). Nonetheless, there are few empirical studies available. The search retrieved 126 records of which 84 contained potentially relevant citations. However, only 17 studies met the inclusion criteria of this review, meaning that the studies used empirical methods and focused exclusively on deafness in the context of HIV and AIDS. One of the studies focused on more than one disability category but had very specific data on deafness which was separate from the rest of the data. Description of the studies The first writing about HIV/AIDS and deafness appeared in 1993 and 1994 (i.e. Luckner & Gonzales, 1993; Esses & Beaufoy, 1994; Peinkofer, 1994) followed by an article by Baker-Duncan, Dancer, Highly & Gibson in 1997. Most
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of the published papers (12 of 17) appeared between 2004 and 2008. The XVI International AIDS Conference in 2006 saw the first special session allocated to deafness and HIV/ AIDS (see Coalition Sida des Sourds du Québec, 2006). The early studies in the 1990s were conducted in the United States; the more recent studies cover a broader geography. The geographical locations of the studies were: the United States (n = 7), Nigeria (n = 4), Kenya (n = 3), and one each from Brazil, Cameroon and Swaziland. Most of the studies (14 of 17) focused on HIV/AIDS knowledge among the deaf population (i.e. Luckner & Gonzales, 1993; Baker-Duncan et al., 1997; Woodroffe et al., 1998; Osowole, 2000; Heuttel & Rothstein, 2001; Giros, 2004; Bat-Chava et al., 2005; Groce et al., 2005; Olawuyi, 2006; Groce et al., 2007; Olaleye, Olayinka, Oladapo, Grace & Grace, 2007; Bisol, 2008; Enwereji & Enwereji, 2008; Touko, 2008). Four studies explored the topic of HIV and AIDS from the perspective of reproductive health (i.e. Olawuyi, 2006; Steadman Group, 2007; Bisol, 2008; Enwereji & Enwereji, 2008). Comments about reproductive health systems were found in other studies. Often the inaccessibility of health services and health education for deaf populations was pointed out, yet few studies explored this issue (see Enwereji & Enwereji, 2008). Two studies focused entirely on comparing HIV-prevalence data among the deaf population with the national data in that particular country (i.e. Taegtmeyer, Henderson, Angala & Ngare, 2006; Taegtmeyer, Hightower, Opiyo, Mwachiro, Henderson, Angala et al., 2008) or district (i.e. Monaghan, 2008). Six studies worked with a control group (i.e. Woodroffe et al., 1998; Osowole, 2000; Heuttel & Rothstein, 2001; Groce et al., 2005; Groce et al., 2007; Bisol, 2008), and two of these used random sampling. Seven studies used no control group (i.e. Luckner & Gonzales, 1993; Woodroffe et al., 1998; Giros, 2004; Bat-Chava et al., 2005; Olawuyi, 2006; Steadman Group, 2007; Enwereji & Enwereji, 2008). Only two studies used a qualitative design (i.e. Mallinson, 2004; Bat-Chava et al., 2005). One of these studies focused on the experience of being deaf and homosexual (i.e. Mallinson, 2004). Depending on purpose and accessibility, the number of participants in the 17 studies reviewed varied from five to 3 358. Outcomes of the studies Three studies provided data on HIV prevalence in the deaf population (i.e. Monaghan, 2008; Taegtmeyer et al., 2008; Touko, 2008) (Figure 1). Monaghan’s (2008) study used data publicly available from the Maryland Department of Health and Mental Hygiene (MDHMH) in the United States. Her analysis revealed that HIV prevalence among deaf people in Maryland (USA) was twice as high as in the general population (Monaghan, 2008). The study by Taegtmeyer et al. (2008) used HIV-prevalence data from voluntary counselling and testing (VCT) centres in Kenya, wherein 3 358 clients, of which half were deaf, were tested for HIV. The deaf persons using the VCT sites were shown to be as much at risk of HIV infection as the hearing population, with HIV prevalence in the group similar to the national average. Similarly, Touko’s (2008) cross-sectional study of 126 young deaf people in Cameroon revealed that HIV prevalence (4%) among the deaf population mirrored the
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Potentially relevant studies (n = 126)
Citations excluded because the focus of the research was not on deafness (n = 42)
Potentially relevant studies focusing on deafness and HIV/AIDS (n = 84)
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Studies excluded because of not using empirical methods (n = 67)
Studies included in the systematic review (n = 17)
Figure 1: Process of including and excluding potentially relevant citations in the systematic review
HIV-prevalence estimate from the national data. Contrary to the common notion that people with disabilities are not sexually active (Groce, 2003), studies have shown that deaf people are indeed sexually active. Touko’s (2008) study revealed that 80% of the deaf participants had had sexual intercourse by the age of 16.7 years (lower than the national average). However, partnerships in that group in general were not stable and 45% had engaged in multiple partnerships (higher than the national average). A report by the Steadman Group (2007) revealed that 36% of 150 deaf participants had engaged in sex prior to the age of 16 and that 20% had engaged in multiple partnerships. In study that sampled 92 learners in Brazil, the deaf learners reported less sexual activity than did their hearing peers, but they showed a tendency for earlier sexual debut. There was no difference between the two groups in the average number of sexual partners in the previous 12 months (Bisol, 2008). Bisol (2008) reported significantly more cases of sexual abuse among the deaf than among their able-bodied peers. The Steadman Group (2007) revealed that 13% of deaf participants had experienced sexual abuse in their lifetime, and 5% had experienced this at first sexual encounter, but comparative data for the general population was not given in the study. Most of the studies had gathered data on HIV/AIDS knowledge and found that deaf people had insufficient knowledge and less access to information and services. The first study conducted on deafness and HIV/AIDS focused entirely on the knowledge and opinions of deaf adolescents in the United States (Luckner & Gonzales, 1993). That study (204 participants; no control group) concluded that the disabled participants were “as misinformed as their hearing peers.” Later studies in Swaziland (191 participants,
randomised sampling) and Nigeria (100 participants, randomised sampling) compared the HIV/AIDS knowledge of hearing and deaf people and revealed that deaf people lacked HIV/AIDS knowledge (Groce et al., 2005; Groce et al., 2007). The two studies revealed that deaf people were more prone than their hearing peers to believe in false modes of HIV transmission, such as hugging or air-borne transmission. However, the risk of HIV infection through sexual intercourse was largely known to those in the deaf group. Other studies using control groups revealed similar results. In a study by Heuttel & Rothstein (2001) in the United States (80 university students, with control group), only 41% of the hearing students correctly answered nine of ten questions, as compared to 91% in the hearing group. Another study from the United States (Woodroffe et al., 1998) compared 43 deaf or hearing-impaired people with 37 hearing people. It was found that the deaf people were less likely to associate sexual contact with drug users (p = 0.01) or number of sexual partners as higher-risk sexual behaviour (p = 0.03), and more likely to associate the use of public restrooms (p = 0.01), kissing on the cheek (p = 0.01), and visiting an AIDS patient (p = 0.01) with increased risk of contracting HIV (Woodroffe et al., 1998). Similarly, in Bat-Chava et al.’s (2005) study in New York (134 urban participants, with no control group), deaf sign-language users expressed beliefs that reflected a lack of knowledge about HIV transmission, prevention and progression of the disease. Olawuyi’s (2006) study in Nigeria (100 urban participants, with no control group) revealed that only 10% of the respondents demonstrated correct knowledge about HIV transmission; this low level of HIV/AIDS knowledge was associated with a lack of health services and sexual and reproductive health education
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for deaf people. The study by Luckner & Gonzales (1993) revealed that 62% of the adolescent, deaf or hearingimpaired respondents thought that married people could not get AIDS. Baker-Duncan et al. (1997) surveyed 129 deaf adolescents from five state schools in the United States (with no control group) and found that the students scored extremely low on questions testing their HIV/AIDS knowledge (cf. Bat-Chava et al., 2005). Particular emphasis was placed on the finding that even grade 12 students could not correctly answer more than 60% of the 35 questions about HIV. In a study by Giros (2004) in Kenya (250 deaf participants, with no control group), 80% of the participants were aware of HIV and AIDS and able to identify sexual intercourse as the correct mode of HIV transmission, yet 41% also named mosquito bites, 39.6% mentioned kissing and 26.4% mentioned sharing drinking utensils as modes of HIV transmission. Evaluating an HIV intervention for deaf school children in Nigeria (77 participants), Osowole (2000) shows that targeted interventions can increase HIV/AIDS knowledge among deaf learners. However, the particular intervention evaluated did not change the participants’ perception of their vulnerability to HIV. In opposition to that conclusion, data from the Steadman Group (2007) suggested that deaf people in Kenya perceived themselves to be at higher risk of HIV infection than did their able-bodied peers. It is not clear what triggers these different perceptions of vulnerability; most likely it is related to the ages of the participants. While the participants in the Nigerian study (Osowole, 2000) were teenagers, the Kenyan study (Steadman Group, 2007) had approached mainly adults — who might have been exposed to AIDS-related deaths among their peers for a longer period of time. In any case, studies that investigated this issue have suggested relatively high rates of AIDS-related deaths among the deaf (Mallinson, 2004; Monaghan, 2006 and 2008; Bisol, 2008) — which should lead to a higher awareness of HIV among the deaf population. Very few studies have investigated attitudes and sexual practices among the deaf. Woodroffe et al. (1998) found that a sample deaf and hearing-impaired people in the United States (77 participants, with control group) had more negative attitudes towards people living with HIV than did their hearing peers. For instance, they were more prone to believing that an HIV-positive dentist should not be allowed to work (p = 0.02) and that landlords should evict people with AIDS (p = 0.04) (Woodroffe et al., 1998). The same group of deaf people was less likely to believe that they had to change their sexual behaviour as a result of the HIV epidemic (p = 0.01). In contrast, the report by the Steadman Group (2007) suggested that deaf people were not likely to discriminate against HIV-positive people. In that study, 95% of the deaf respondents agreed with the statement that an ‘HIV and AIDS person should continue his work and family responsibilities’ and 97% agreed that ‘a person with HIV should mix with other students.’ Some studies have revealed a low level of condom use in the deaf community. In Cameroon, Touko (2008) found only 47% of sexually active deaf people had used a condom at last intercourse (no comparison group). However, Bisol’s (2008) study in Brazil, which was conducted with a compari
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son group, did not reveal any difference in frequency of condom use between the hearing and deaf participants. The Steadman Group (2007) reported that 81% of the deaf respondents indicated that they knew how to use a condom, but 61% also indicated that condoms could break easily. Several of the studies reviewed (i.e. Baker-Duncan et al., 1997; Heuttel & Rothstein, 2001; Bat-Chava et al., 2005; Groce et al., 2007; Steadman Group, 2007) commented on communication challenges and the lack of sign interpretation. In Groce et al.’s (2005) study in Swaziland, 99% of the deaf participants reported difficulties in communicating with healthcare staff, while in the study by Bat-Chava et al. (2005) all participants mentioned this issue. The Steadman Group (2007) reported that 44% of the deaf respondents identified communication as a major issue in VCT. This was a higher proportion than among the other disability groups: for example, none of the blind respondents identified communication as a barrier to VCT. Bat-Chava et al. (2005) reported that very few deaf people sampled in New York had gone for VCT, with the participants reporting difficulty in communicating with medical providers and limited access to health information and proper medical care. Confidentiality was also raised as a major issue in VCT uptake (Bat-Chava et al., 2005). In contrast, in a study by Bisol (2008) in Brazil a greater proportion of the deaf participants than the hearing participants (21% and 8%, respectively) said they had had an HIV test. The Steadman Group (2007) found that deaf people were the group with the highest VCT uptake (83%) in a locality where they had assistance from a disabled people’s organisation; VCT uptake among people in other disability categories was as follows: 44% among those with a physical disability, 34% among the visually impaired, and 18% among those with an intellectual disability. To date, the studies by Bisol (2008) and the Steadman Group (2007) are the only ones to have measured VCT uptake quantitatively among people with disabilities. Discussion The studies reviewed included a total of 5 317 participants. The body of research on deafness and HIV/AIDS now includes studies from a relatively wide geographical area, although noticeably few studies have been conducted in countries with widespread HIV epidemics. Research from southern Africa is particularly scarce (only one relevant study from Swaziland was retrieved). Southern Africa is a region with a high prevalence of both HIV and disability, however. Civil society organisations (such as the Disability HIV and AIDS Trust [DHAT], which is a non-profit regional organisation working in SADC countries) try to raise awareness about the interrelations of HIV and disability (including deafness), yet they need to base their work on research evidence — which is still urgently needed. Deaf people are vulnerable to HIV infection and they appear to face particular challenges with regard to accessing information and services pertaining to HIV. However, there is little available information about other relevant factors, such as reproductive health, sexual abuse, sexual behaviour, condom use and VCT uptake. It is often argued that it is difficult to collect HIV-prevalence
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data on people with disabilities. However, Taegtmeyer et al. (2006) and Taegtmeyer et al. (2008) showed that it can be done even in resource-poor settings. The respondentdriven method could be used as this produces statistically relevant results and is cost-effective. Following a national survey that included people with disabilities, data on HIV prevalence among deaf people in South Africa has recently become available. The data indicated that people with disabilities have a higher HIV prevalence (14.1%) than the national average (10.9%), which was also higher than that for groups at higher risk of HIV, such as men who have sex with men, recreational drug users, and heavy drinkers (Shisana, Rehle, Simbayi, Zuma, Jooste, Pillay-van-Wyk et al., 2009). While an early study in the United States indicated essentially no difference in levels of HIV/AIDS knowledge between the hearing and deaf populations (i.e. Luckner & Gonzales, 1993), later studies in other parts of the world have shown significant differences in this regard (i.e. Groce et al., 2005; Groce et al., 2007). Inadequate information exists on HIV/AIDS knowledge among deaf people. Past research suggests that deaf people are as likely, if not more likely, than their able-bodied peers to have multiple sexual partners, to experience sexual abuse, to experience sexual debut at a young age, and to use condoms infrequently. Other studies have likewise suggested a high level of sexual vulnerability for this group. For instance, Kvam (2004) and Kvam & Braathen (2008) focused on sexual abuse in Norway and Malawi, respectively. The study in Norway shows that reports of abuse were two- to three-times more frequent among deaf youths than among their hearing peers. The quality of the individual study designs varied in the research that was reviewed. For instance, some quantitative studies did not work with control groups nor did they compare their data to national statistics. Babbie & Mouton (2001) emphasise that control groups are important in social scientific research — not only to measure the effects of a particular intervention or phenomenon but also the “effect of any events” occurring “outside” these. It is meaningless to generate findings showing that a group of deaf people believe in false modes of HIV transmission or that a certain percentage of them have been sexually abused when it is not known whether this might be similarly occurring in the wider population. The implications for HIV intervention will vary in these cases: if the phenomena occur in the wider population, then a countrywide intervention might be necessary, while disability-specific intervention would be needed if they only apply to the deaf population. One issue that emerged from the review is the need to improve ethical standards in research with disabled people. In most of the studies reviewed here, the interviewers of the deaf participants were teachers, sign-language interpreters or peer counsellors, and, in a few cases, family members. In the absence of a larger pool of sign interpreters — interviewers (and health service staff) have used teachers, peers and family members to ensure that they can understand what a deaf participant is communicating and that the latter clearly understands what is being communicated to him or her. A particular ethical challenge lies in the propensity for deaf people to have ‘small and
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close-knit’ social networks (Pollard, 2007). Therefore, when using peers or family members to help communicate, preserving the anonymity of the research participants is an obvious challenge, and the use of peers to gain access to and assist in interviews poses the challenge of maintaining confidentiality. Conclusions There is little available data about deaf people’s experiences and difficulties with accessing health services. In particular, the deaf community lacks HIV/AIDS-related information and prevention and treatment support in the absence of verbal and visual means to address their needs. Consequently, there is insufficient understanding about the exact nature of the risks of HIV infection among deaf people — specifically with regard to sexual abuse, condom use, multiple partners and sexual debut. Thus, there is an urgent need for research evidence that can assist HIV-prevention interventions and treatment among the disabled, particularly in the southern African context. The review has found support for the common hypotheses that deaf people, in relation to able-bodied people: a) might be more vulnerable to HIV infection, b) have less HIV/ AIDS knowledge, and c) have less access to HIV prevention and intervention programmes (Groce, 2003; Bisol, 2008). However, the literature seems to commonly overlook the fact that HIV is a sexually transmitted infection and that matters of sexuality, as well as sexual abuse, will influence a person’s ability to protect themself from exposure to HIV. Although some of the studies specifically mentioned sexual abuse, very little research has been done on sexuality and sexual abuse in relation to HIV among the disabled. The authors — Jill Hanass-Hancock (PhD) is a researcher and coordinates the disability and HIV leadership project at HEARD. Her research interests are HIV/AIDS, disability, sexuality education, education, community development, creative arts and sport. Loveness Satande (MDev) is a researcher at HEARD. Her research interests are HIV/AIDS, disability, sexuality education, education, community development, and youth.
References Babbie, E. & Mouton, J. (2001) The Practice of Social Research. Cape Town, South Africa, Oxford University Press. Baker-Duncan, N., Dancer, J., Highly, P. & Gibson, B. (1997) Deaf adolescents’ knowledge of AIDS: grade and gender effects. American Annals of the Deaf 142(5), pp. 368–372. Bat-Chava, Y., Martin, D. & Kosciw, J.G. (2005) Barriers to HIV/ AIDS knowledge and prevention among deaf and hard-of-hearing people. AIDS Care 17(5), pp. 623–634. Bisol, C. (2008) HIV/AIDS knowledge and health-related attitudes and behaviours among deaf and hearing adolescents in southern Brazil. American Annals of the Deaf 153(4), pp. 349–356. Coalition Sida Des Sourds Du Québec (2006) Deaf communities and AIDS. Paper presented at the XVI International AIDS Conference, Toronto, Canada, 13–18 August 2006. Enwereji, E.E. & Enwereji, K.O. (2008) Disabled persons and HIV/ AIDS prevention: a case study of deaf and leprosy persons in Nigeria. East African Journal of Public Health 5(2), pp. 55–61. Esses, V.M. & Beaufoy, S.L. (1994) Determinants of attitudes
Downloaded by [University of Waterloo] at 10:59 10 November 2014
192
toward people with disabilities. Journal of Social Behavior and Personality 9(5), pp. 43–64. Gaskins, S. (1999) Special population: HIV/AIDS among the deaf and hard of hearing. Journal of the Association of Nurses in AIDS Care (JANAC) 10(2), pp. 75–78. Giros, S. (2004) Prevention in practise: three HIV/AIDS prevention programs for people with disabilities. In: Gräber, D., HanassHancock, J., Müller, D., Wall, K. & Zimmerman, D. (eds.) Symposium — HIV/AIDS and Disability: a Global Challenge. Koenigswinter, Germany, IKO-Verlag. Groce, N.E. (2003) HIV/AIDS and people with disability. The Lancet 361(9367), pp. 1401–1402. Groce, N.E. (2004) HIV/AIDS and Disability: Capturing Hidden Voices. The World Bank/Yale University Global Survey on HIV/ AIDS and Disability. April 2004. Washington, D.C., The World Bank. Groce, N.E., Yousafzai, A.K., Dlamini, P. & Wirz, S. (2005) HIV/ AIDS and Disability: A Pilot Survey of HIV/AIDS Knowledge among a Deaf Population in Swaziland. New Haven, Connecticut, Yale University of Public Health. Groce, N.E., Yousafzai, A.K. & Van der Maas, F. (2007) HIV/AIDS and disability: differences in HIV/AIDS knowledge between deaf and hearing people in Nigeria. Disability Rehabilitation 29, pp. 367–371. Hanass-Hancock, J. (2009) Disability and HIV/AIDS — a systematic review of literature on Africa. Journal of the International AIDS Society 12, p. 34. Heuttel, K.L. & Rothstein, W.G. (2001) HIV/AIDS knowledge and information sources among deaf and hearing college students. American Annals of the Deaf 146(3), pp. 280–286. HRSA Care Action (2001) ‘HIV/AIDS in the deaf and hard of hearing.’ April 2001. Washington, D.C., U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), HIV/AIDS Bureau. Kvam, M.H. (2004) Sexual abuse of deaf children: a retrospective analysis of the prevalence and characteristics of childhood sexual abuse among deaf adults in Norway. Child Abuse and Neglect 28, pp. 241–251. Kvam, M.H. & Braathen, S.H. (2008) ‘I thought…maybe this is my chance’: Sexual abuse against girls and women with disabilities in Malawi. Sexual Abuse: A Journal of Research and Treatment 20(1), pp. 5–24. Luckner, J. & Gonzales, R. (1993) What deaf and hard-of-hearing adolescents know and think about AIDS. American Annals of the Deaf 138(4), pp. 338–342. Mallinson, K.R. (2004) Perceptions of HIV/AIDS by deaf gay men. Journal of the Association of Nurses in AIDS Care 15(4), pp. 27–36. Monaghan, L. (2006) HIV infection statistics for hearing and deaf populations: analysis and policy suggestions. In: Schmaling, C. & Monaghan, l. (eds.) HIV/AIDS and Deaf Communities. Coleford, Maryland, Douglas McLean. Monaghan, L. (2008) Deaf and HIV/AIDS. Paper presented at the XVII International AIDS Conference, Mexico, dates. Mont, D. (2007) Measuring Disability Prevalence. March 2007. SP Discussion Paper No. 0706. Geneva, The World Bank. Nixon, S. & Hanass-Hancock, J. (2009) The fields of HIV/AIDS and disability: past, present and future. Journal of the International AIDS Society 12, p. 28. Olaleye, A., Olayinka, A.A., Oladapo, A.L., Grace, E.D. & Grace, F.I. (2007) Sexual behaviours and reproductive health knowledge among in-school young people with disabilities in Ibadan, Nigeria. Health Education 107(2), pp. 208–218.
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Olawuyi, O. (2006) Prevalence of HIV/AIDS among deaf students in Nigeria: causes and remedies. Paper presented at the XVI International AIDS Conference, Toronto, Canada, 13–18 August 2006. Osowole, O. (2000) Effect of peer education on deaf secondary school students’ HIV/AIDS knowledge, attitudes and sexual behaviour. African Journal of Reproductive Health 4(2), pp. 93–103. Peinkofer, J.R. (1994) HIV education for the deaf, a vulnerable minority. Public Health Reports 109(3), pp. 390–396. Pollard, R.Q. (2007) Ethical conduct in research involving deaf people. In: Gutman, V.A. (ed.) Ethics in Mental Health and Deafness. Washington, D.C., Gallaudet Press. Shisana, O., Rehle, T., Simbayi, L.C., Zuma, K., Jooste, S., Pillayvan-Wyk, V., Mbelle, N., Van Zyl, J., Parker, W., Zungu, N.P., Pezi, S. & SABSSM III Implementation Team (2009) South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008: A Turning Tide among Teenagers? Cape Town, South Africa, HSRC Press. Steadman Group (2007) HIV and AIDS Knowledge, Attitude and Practise and Accessibility Study. Nairobi, Kenya, Handicap International. Stevens, H. (1998) AIDS, not hearing aids: exploring the link between the deaf community and HIV/AIDS. Health and Human Rights 2(4), pp. 98–113. Taegtmeyer, M., Henderson, K., Angala, P. & Ngare, C. (2006) Responding to the signs: a voluntary counselling and testing programme for the deaf in Kenya. Paper presented at the XVI World AIDS Conference, Toronto, Canada, 13–18 August 2006. Taegtmeyer, T., Hightower, A., Opiyo, W., Mwachiro, L., Henderson, K., Angala, P., Ngare, C. & Marum, E. (2008) A peer-led HIV counselling and testing programme for the deaf in Kenya. Disability and Rehabilitation 31(6), pp. 508–514. Touko, A. (2008) Sexual behaviour and prevalence rate among the young deaf population in Cameroon. Paper presented at the XVII World AIDS Conference, Mexico City, Mexico, 3–8 August 2008. UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS. Winningham, A. (2008) Lessons learned from more than two decades of HIV/AIDS prevention efforts: implications for people who are deaf or hard of hearing. American Annals of the Deaf 153(1), pp. 48–54. Woodroffe, T., Gorenflo, D.W., Meador, H.E. & Zazove, P. (1998) Knowledge and attitudes about AIDS among deaf and hard-ofhearing persons. AIDS Care 10(3), pp. 377–386.
African Journal of AIDS Research Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/raar20
Deafness and HIV/AIDS: a systematic review of the literature a
Jill Hanass-Hancock & Loveness Satande
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Health Economics and HIV/AIDS Research Division (HEARD) , University of KwaZuluNatal , Westville Campus, J-Block, Durban, 4041, South Africa Published online: 17 Sep 2010.
To cite this article: Jill Hanass-Hancock & Loveness Satande (2010) Deafness and HIV/AIDS: a systematic review of the literature, African Journal of AIDS Research, 9:2, 187-192, DOI: 10.2989/16085906.2010.517488 To link to this article: http://dx.doi.org/10.2989/16085906.2010.517488
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ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2010.517488
Deafness and HIV/AIDS: a systematic review of the literature Jill Hanass-Hancock* and Loveness Satande
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Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, Westville Campus, J-Block, Durban 4041, South Africa *Corresponding author, e-mail: [email protected] A systematic review of the literature focused on empirical work on deafness and HIV/AIDS published during the past decade. The review reveals that deaf people are vulnerable to contracting HIV and might lack access to HIV/ AIDS information, testing and treatment. Three studies that were located through this review included prevalence data on disability and HIV. These indicated that deaf people are as likely, if not twice as likely, to be infected with HIV. The data also reveal that although some research has focused on HIV/AIDS knowledge among deaf people, this might not be the main area of concern in relation to HIV risk for this population. The available research more often points to increased instances of multiple partners, sexual abuse and earlier sexual debut, and, in some contexts, decreased use of condoms. These factors might explain increased risk of HIV infection for the deaf population. Additionally, the review elaborates on the geographical and methodological focuses of past research and identifies gaps, strengths and weaknesses in this body of literature. Keywords: disabilities, health knowledge, HIV prevention, risk identification, southern Africa
Introduction About 10% of the world’s population is estimated to be disabled (Mont, 2007; UNAIDS, 2009). Although HIV risk among people with disabilities has been acknowledged, little is known about these risks. This review focuses on the effects of HIV and AIDS on deaf people in order to investigate current knowledge and the gaps in the field with regard to the hypotheses that deaf people, in comparison to able-bodied people: a) are more vulnerable to HIV infection, b) have less HIV/AIDS knowledge, and c) have less access to HIV-prevention services and interventions (see Groce, 2004; Bisol, 2008). Organisations such as ‘AIDS Ahead’ in the United Kingdom and ‘Liverpool VCT, Care and Treatment’ in Kenya and their initiatives for the deaf do address these issues. However, to date, research on deafness and HIV/AIDS has been limited and particularly scarce in southern Africa. It is still unclear how severely the deaf population may be affected by HIV and AIDS. It is generally believed that many deaf people and those who are hearing impaired are particularly vulnerable to HIV infection because of communication difficulties and lower levels of access to health-related information and services (Peinkofer, 1994; Groce, Yousafzai & Van der Maas, 2007). Communication problems are thought to emanate from language barriers because the use of sign language is not a fluent communication mode within the wider population (Stevens, 1998). Furthermore, while the deaf community generally has developed its own culture and informal communication channels, the concern is that this does not obviate the risk of myths and misinformation about HIV and AIDS (Woodroffe, Gorenflo, Meador
& Zazove, 1998; Gaskins, 1999; Heuttel & Rothstein, 2001; Bat-Chava, Martin & Kosciw, 2005; Groce, Yousafzai, Dlamini & Wirz, 2005). A global survey on disability in the context of HIV and AIDS suggests that people with disabilities, including deaf people, might be at greater risk of contracting HIV infection (Groce et al., 2005). The Health Resources and Services Administration (HRSA) in the United States has asserted that the prevalence of HIV among deaf and hearingimpaired people is greater than among the general population (HRSA Care Action, 2001). For instance, 10% of the population in the United States is deaf or hearing-impaired (Winningham, 2008), and in 2001 the HRSA estimated that 8 000 to 40 000 of this group were infected with HIV. This estimate expresses a similar claim made by Groce et al. (2005) in the world survey. In Africa, such estimates are not available. This literature review provides an overview of the epidemiological drivers and trends in HIV infections among deaf people, including historical, geographical and thematic factors, as well as the methodological strengths and weaknesses in the body of research on this topic to date. Methods Search strategy Twenty-two electronic databases were searched. The data was collected between January and May 2009 from the following: SAGE, AIDSLINE, JSTOR, AJOL, Anthropology Index, Cambridge Online Journals, EBSCOhost, iLink OPAC, ProQuest, Sabinet, Science Direct, Elsevier, ISI, Web of Science Social Science Citation Index, Wilson Web
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Education, Wilson Web Humanities, PubMed, Quarterly Index of African Periodical Literature, Psychology Journals, Social Science Citation Index, SOURCE, and the University of KwaZulu-Natal Federated Search as well as libraries of agencies involved in disability work (e.g. Disabled People International [DPI], Africa Campaign on disability and HIV). Relevant documents from conferences held since 2000 were also reviewed. Reference is made to World AIDS Conferences, African AIDS conferences and two international symposia focusing on HIV/AIDS and disability. In addition, unpublished and ongoing studies were accessed via the Africa-wide ‘Disability and HIV/AIDS’ network of the Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal in Durban, South Africa. The search was restricted to studies that included both HIV/AIDS and deafness. Search terms for the search string were identified through MeSH. Common synonyms for HIV, AIDS, and deafness and its different forms were identified (total number 24) and then entered into various search engines. The final sample of 17 included only studies that used empirical methods (see Fig. 1), and the review captured only literature written in English. The research methods, the targeted population (gender and age), and geographical distribution were investigated in the final analysis of the articles reviewed. Excel software was used to assist the analysis. A statistical meta-analysis was difficult to conduct as the data collected involved diverse areas; hence, articles were analysed using content analysis. As some of the research had not yet been published, this review cannot make any assumptions about possible bias in individual research papers. Also, at the time of the review the authors were unable to access publications of the British Deaf Association (due to renovations at the association’s offices). Results Research in the area of disability in the context of HIV and AIDS has increased in recent years (Nixon & HanassHancock, 2009) and data on people with hearing impairments or deafness can be found in studies that include more than one disability type. Deafness has received the most attention of all disability categories to date (HanassHancock, 2009). Nonetheless, there are few empirical studies available. The search retrieved 126 records of which 84 contained potentially relevant citations. However, only 17 studies met the inclusion criteria of this review, meaning that the studies used empirical methods and focused exclusively on deafness in the context of HIV and AIDS. One of the studies focused on more than one disability category but had very specific data on deafness which was separate from the rest of the data. Description of the studies The first writing about HIV/AIDS and deafness appeared in 1993 and 1994 (i.e. Luckner & Gonzales, 1993; Esses & Beaufoy, 1994; Peinkofer, 1994) followed by an article by Baker-Duncan, Dancer, Highly & Gibson in 1997. Most
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of the published papers (12 of 17) appeared between 2004 and 2008. The XVI International AIDS Conference in 2006 saw the first special session allocated to deafness and HIV/ AIDS (see Coalition Sida des Sourds du Québec, 2006). The early studies in the 1990s were conducted in the United States; the more recent studies cover a broader geography. The geographical locations of the studies were: the United States (n = 7), Nigeria (n = 4), Kenya (n = 3), and one each from Brazil, Cameroon and Swaziland. Most of the studies (14 of 17) focused on HIV/AIDS knowledge among the deaf population (i.e. Luckner & Gonzales, 1993; Baker-Duncan et al., 1997; Woodroffe et al., 1998; Osowole, 2000; Heuttel & Rothstein, 2001; Giros, 2004; Bat-Chava et al., 2005; Groce et al., 2005; Olawuyi, 2006; Groce et al., 2007; Olaleye, Olayinka, Oladapo, Grace & Grace, 2007; Bisol, 2008; Enwereji & Enwereji, 2008; Touko, 2008). Four studies explored the topic of HIV and AIDS from the perspective of reproductive health (i.e. Olawuyi, 2006; Steadman Group, 2007; Bisol, 2008; Enwereji & Enwereji, 2008). Comments about reproductive health systems were found in other studies. Often the inaccessibility of health services and health education for deaf populations was pointed out, yet few studies explored this issue (see Enwereji & Enwereji, 2008). Two studies focused entirely on comparing HIV-prevalence data among the deaf population with the national data in that particular country (i.e. Taegtmeyer, Henderson, Angala & Ngare, 2006; Taegtmeyer, Hightower, Opiyo, Mwachiro, Henderson, Angala et al., 2008) or district (i.e. Monaghan, 2008). Six studies worked with a control group (i.e. Woodroffe et al., 1998; Osowole, 2000; Heuttel & Rothstein, 2001; Groce et al., 2005; Groce et al., 2007; Bisol, 2008), and two of these used random sampling. Seven studies used no control group (i.e. Luckner & Gonzales, 1993; Woodroffe et al., 1998; Giros, 2004; Bat-Chava et al., 2005; Olawuyi, 2006; Steadman Group, 2007; Enwereji & Enwereji, 2008). Only two studies used a qualitative design (i.e. Mallinson, 2004; Bat-Chava et al., 2005). One of these studies focused on the experience of being deaf and homosexual (i.e. Mallinson, 2004). Depending on purpose and accessibility, the number of participants in the 17 studies reviewed varied from five to 3 358. Outcomes of the studies Three studies provided data on HIV prevalence in the deaf population (i.e. Monaghan, 2008; Taegtmeyer et al., 2008; Touko, 2008) (Figure 1). Monaghan’s (2008) study used data publicly available from the Maryland Department of Health and Mental Hygiene (MDHMH) in the United States. Her analysis revealed that HIV prevalence among deaf people in Maryland (USA) was twice as high as in the general population (Monaghan, 2008). The study by Taegtmeyer et al. (2008) used HIV-prevalence data from voluntary counselling and testing (VCT) centres in Kenya, wherein 3 358 clients, of which half were deaf, were tested for HIV. The deaf persons using the VCT sites were shown to be as much at risk of HIV infection as the hearing population, with HIV prevalence in the group similar to the national average. Similarly, Touko’s (2008) cross-sectional study of 126 young deaf people in Cameroon revealed that HIV prevalence (4%) among the deaf population mirrored the
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Potentially relevant studies (n = 126)
Citations excluded because the focus of the research was not on deafness (n = 42)
Potentially relevant studies focusing on deafness and HIV/AIDS (n = 84)
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Studies excluded because of not using empirical methods (n = 67)
Studies included in the systematic review (n = 17)
Figure 1: Process of including and excluding potentially relevant citations in the systematic review
HIV-prevalence estimate from the national data. Contrary to the common notion that people with disabilities are not sexually active (Groce, 2003), studies have shown that deaf people are indeed sexually active. Touko’s (2008) study revealed that 80% of the deaf participants had had sexual intercourse by the age of 16.7 years (lower than the national average). However, partnerships in that group in general were not stable and 45% had engaged in multiple partnerships (higher than the national average). A report by the Steadman Group (2007) revealed that 36% of 150 deaf participants had engaged in sex prior to the age of 16 and that 20% had engaged in multiple partnerships. In study that sampled 92 learners in Brazil, the deaf learners reported less sexual activity than did their hearing peers, but they showed a tendency for earlier sexual debut. There was no difference between the two groups in the average number of sexual partners in the previous 12 months (Bisol, 2008). Bisol (2008) reported significantly more cases of sexual abuse among the deaf than among their able-bodied peers. The Steadman Group (2007) revealed that 13% of deaf participants had experienced sexual abuse in their lifetime, and 5% had experienced this at first sexual encounter, but comparative data for the general population was not given in the study. Most of the studies had gathered data on HIV/AIDS knowledge and found that deaf people had insufficient knowledge and less access to information and services. The first study conducted on deafness and HIV/AIDS focused entirely on the knowledge and opinions of deaf adolescents in the United States (Luckner & Gonzales, 1993). That study (204 participants; no control group) concluded that the disabled participants were “as misinformed as their hearing peers.” Later studies in Swaziland (191 participants,
randomised sampling) and Nigeria (100 participants, randomised sampling) compared the HIV/AIDS knowledge of hearing and deaf people and revealed that deaf people lacked HIV/AIDS knowledge (Groce et al., 2005; Groce et al., 2007). The two studies revealed that deaf people were more prone than their hearing peers to believe in false modes of HIV transmission, such as hugging or air-borne transmission. However, the risk of HIV infection through sexual intercourse was largely known to those in the deaf group. Other studies using control groups revealed similar results. In a study by Heuttel & Rothstein (2001) in the United States (80 university students, with control group), only 41% of the hearing students correctly answered nine of ten questions, as compared to 91% in the hearing group. Another study from the United States (Woodroffe et al., 1998) compared 43 deaf or hearing-impaired people with 37 hearing people. It was found that the deaf people were less likely to associate sexual contact with drug users (p = 0.01) or number of sexual partners as higher-risk sexual behaviour (p = 0.03), and more likely to associate the use of public restrooms (p = 0.01), kissing on the cheek (p = 0.01), and visiting an AIDS patient (p = 0.01) with increased risk of contracting HIV (Woodroffe et al., 1998). Similarly, in Bat-Chava et al.’s (2005) study in New York (134 urban participants, with no control group), deaf sign-language users expressed beliefs that reflected a lack of knowledge about HIV transmission, prevention and progression of the disease. Olawuyi’s (2006) study in Nigeria (100 urban participants, with no control group) revealed that only 10% of the respondents demonstrated correct knowledge about HIV transmission; this low level of HIV/AIDS knowledge was associated with a lack of health services and sexual and reproductive health education
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for deaf people. The study by Luckner & Gonzales (1993) revealed that 62% of the adolescent, deaf or hearingimpaired respondents thought that married people could not get AIDS. Baker-Duncan et al. (1997) surveyed 129 deaf adolescents from five state schools in the United States (with no control group) and found that the students scored extremely low on questions testing their HIV/AIDS knowledge (cf. Bat-Chava et al., 2005). Particular emphasis was placed on the finding that even grade 12 students could not correctly answer more than 60% of the 35 questions about HIV. In a study by Giros (2004) in Kenya (250 deaf participants, with no control group), 80% of the participants were aware of HIV and AIDS and able to identify sexual intercourse as the correct mode of HIV transmission, yet 41% also named mosquito bites, 39.6% mentioned kissing and 26.4% mentioned sharing drinking utensils as modes of HIV transmission. Evaluating an HIV intervention for deaf school children in Nigeria (77 participants), Osowole (2000) shows that targeted interventions can increase HIV/AIDS knowledge among deaf learners. However, the particular intervention evaluated did not change the participants’ perception of their vulnerability to HIV. In opposition to that conclusion, data from the Steadman Group (2007) suggested that deaf people in Kenya perceived themselves to be at higher risk of HIV infection than did their able-bodied peers. It is not clear what triggers these different perceptions of vulnerability; most likely it is related to the ages of the participants. While the participants in the Nigerian study (Osowole, 2000) were teenagers, the Kenyan study (Steadman Group, 2007) had approached mainly adults — who might have been exposed to AIDS-related deaths among their peers for a longer period of time. In any case, studies that investigated this issue have suggested relatively high rates of AIDS-related deaths among the deaf (Mallinson, 2004; Monaghan, 2006 and 2008; Bisol, 2008) — which should lead to a higher awareness of HIV among the deaf population. Very few studies have investigated attitudes and sexual practices among the deaf. Woodroffe et al. (1998) found that a sample deaf and hearing-impaired people in the United States (77 participants, with control group) had more negative attitudes towards people living with HIV than did their hearing peers. For instance, they were more prone to believing that an HIV-positive dentist should not be allowed to work (p = 0.02) and that landlords should evict people with AIDS (p = 0.04) (Woodroffe et al., 1998). The same group of deaf people was less likely to believe that they had to change their sexual behaviour as a result of the HIV epidemic (p = 0.01). In contrast, the report by the Steadman Group (2007) suggested that deaf people were not likely to discriminate against HIV-positive people. In that study, 95% of the deaf respondents agreed with the statement that an ‘HIV and AIDS person should continue his work and family responsibilities’ and 97% agreed that ‘a person with HIV should mix with other students.’ Some studies have revealed a low level of condom use in the deaf community. In Cameroon, Touko (2008) found only 47% of sexually active deaf people had used a condom at last intercourse (no comparison group). However, Bisol’s (2008) study in Brazil, which was conducted with a compari
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son group, did not reveal any difference in frequency of condom use between the hearing and deaf participants. The Steadman Group (2007) reported that 81% of the deaf respondents indicated that they knew how to use a condom, but 61% also indicated that condoms could break easily. Several of the studies reviewed (i.e. Baker-Duncan et al., 1997; Heuttel & Rothstein, 2001; Bat-Chava et al., 2005; Groce et al., 2007; Steadman Group, 2007) commented on communication challenges and the lack of sign interpretation. In Groce et al.’s (2005) study in Swaziland, 99% of the deaf participants reported difficulties in communicating with healthcare staff, while in the study by Bat-Chava et al. (2005) all participants mentioned this issue. The Steadman Group (2007) reported that 44% of the deaf respondents identified communication as a major issue in VCT. This was a higher proportion than among the other disability groups: for example, none of the blind respondents identified communication as a barrier to VCT. Bat-Chava et al. (2005) reported that very few deaf people sampled in New York had gone for VCT, with the participants reporting difficulty in communicating with medical providers and limited access to health information and proper medical care. Confidentiality was also raised as a major issue in VCT uptake (Bat-Chava et al., 2005). In contrast, in a study by Bisol (2008) in Brazil a greater proportion of the deaf participants than the hearing participants (21% and 8%, respectively) said they had had an HIV test. The Steadman Group (2007) found that deaf people were the group with the highest VCT uptake (83%) in a locality where they had assistance from a disabled people’s organisation; VCT uptake among people in other disability categories was as follows: 44% among those with a physical disability, 34% among the visually impaired, and 18% among those with an intellectual disability. To date, the studies by Bisol (2008) and the Steadman Group (2007) are the only ones to have measured VCT uptake quantitatively among people with disabilities. Discussion The studies reviewed included a total of 5 317 participants. The body of research on deafness and HIV/AIDS now includes studies from a relatively wide geographical area, although noticeably few studies have been conducted in countries with widespread HIV epidemics. Research from southern Africa is particularly scarce (only one relevant study from Swaziland was retrieved). Southern Africa is a region with a high prevalence of both HIV and disability, however. Civil society organisations (such as the Disability HIV and AIDS Trust [DHAT], which is a non-profit regional organisation working in SADC countries) try to raise awareness about the interrelations of HIV and disability (including deafness), yet they need to base their work on research evidence — which is still urgently needed. Deaf people are vulnerable to HIV infection and they appear to face particular challenges with regard to accessing information and services pertaining to HIV. However, there is little available information about other relevant factors, such as reproductive health, sexual abuse, sexual behaviour, condom use and VCT uptake. It is often argued that it is difficult to collect HIV-prevalence
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data on people with disabilities. However, Taegtmeyer et al. (2006) and Taegtmeyer et al. (2008) showed that it can be done even in resource-poor settings. The respondentdriven method could be used as this produces statistically relevant results and is cost-effective. Following a national survey that included people with disabilities, data on HIV prevalence among deaf people in South Africa has recently become available. The data indicated that people with disabilities have a higher HIV prevalence (14.1%) than the national average (10.9%), which was also higher than that for groups at higher risk of HIV, such as men who have sex with men, recreational drug users, and heavy drinkers (Shisana, Rehle, Simbayi, Zuma, Jooste, Pillay-van-Wyk et al., 2009). While an early study in the United States indicated essentially no difference in levels of HIV/AIDS knowledge between the hearing and deaf populations (i.e. Luckner & Gonzales, 1993), later studies in other parts of the world have shown significant differences in this regard (i.e. Groce et al., 2005; Groce et al., 2007). Inadequate information exists on HIV/AIDS knowledge among deaf people. Past research suggests that deaf people are as likely, if not more likely, than their able-bodied peers to have multiple sexual partners, to experience sexual abuse, to experience sexual debut at a young age, and to use condoms infrequently. Other studies have likewise suggested a high level of sexual vulnerability for this group. For instance, Kvam (2004) and Kvam & Braathen (2008) focused on sexual abuse in Norway and Malawi, respectively. The study in Norway shows that reports of abuse were two- to three-times more frequent among deaf youths than among their hearing peers. The quality of the individual study designs varied in the research that was reviewed. For instance, some quantitative studies did not work with control groups nor did they compare their data to national statistics. Babbie & Mouton (2001) emphasise that control groups are important in social scientific research — not only to measure the effects of a particular intervention or phenomenon but also the “effect of any events” occurring “outside” these. It is meaningless to generate findings showing that a group of deaf people believe in false modes of HIV transmission or that a certain percentage of them have been sexually abused when it is not known whether this might be similarly occurring in the wider population. The implications for HIV intervention will vary in these cases: if the phenomena occur in the wider population, then a countrywide intervention might be necessary, while disability-specific intervention would be needed if they only apply to the deaf population. One issue that emerged from the review is the need to improve ethical standards in research with disabled people. In most of the studies reviewed here, the interviewers of the deaf participants were teachers, sign-language interpreters or peer counsellors, and, in a few cases, family members. In the absence of a larger pool of sign interpreters — interviewers (and health service staff) have used teachers, peers and family members to ensure that they can understand what a deaf participant is communicating and that the latter clearly understands what is being communicated to him or her. A particular ethical challenge lies in the propensity for deaf people to have ‘small and
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close-knit’ social networks (Pollard, 2007). Therefore, when using peers or family members to help communicate, preserving the anonymity of the research participants is an obvious challenge, and the use of peers to gain access to and assist in interviews poses the challenge of maintaining confidentiality. Conclusions There is little available data about deaf people’s experiences and difficulties with accessing health services. In particular, the deaf community lacks HIV/AIDS-related information and prevention and treatment support in the absence of verbal and visual means to address their needs. Consequently, there is insufficient understanding about the exact nature of the risks of HIV infection among deaf people — specifically with regard to sexual abuse, condom use, multiple partners and sexual debut. Thus, there is an urgent need for research evidence that can assist HIV-prevention interventions and treatment among the disabled, particularly in the southern African context. The review has found support for the common hypotheses that deaf people, in relation to able-bodied people: a) might be more vulnerable to HIV infection, b) have less HIV/ AIDS knowledge, and c) have less access to HIV prevention and intervention programmes (Groce, 2003; Bisol, 2008). However, the literature seems to commonly overlook the fact that HIV is a sexually transmitted infection and that matters of sexuality, as well as sexual abuse, will influence a person’s ability to protect themself from exposure to HIV. Although some of the studies specifically mentioned sexual abuse, very little research has been done on sexuality and sexual abuse in relation to HIV among the disabled. The authors — Jill Hanass-Hancock (PhD) is a researcher and coordinates the disability and HIV leadership project at HEARD. Her research interests are HIV/AIDS, disability, sexuality education, education, community development, creative arts and sport. Loveness Satande (MDev) is a researcher at HEARD. Her research interests are HIV/AIDS, disability, sexuality education, education, community development, and youth.
References Babbie, E. & Mouton, J. (2001) The Practice of Social Research. Cape Town, South Africa, Oxford University Press. Baker-Duncan, N., Dancer, J., Highly, P. & Gibson, B. (1997) Deaf adolescents’ knowledge of AIDS: grade and gender effects. American Annals of the Deaf 142(5), pp. 368–372. Bat-Chava, Y., Martin, D. & Kosciw, J.G. (2005) Barriers to HIV/ AIDS knowledge and prevention among deaf and hard-of-hearing people. AIDS Care 17(5), pp. 623–634. Bisol, C. (2008) HIV/AIDS knowledge and health-related attitudes and behaviours among deaf and hearing adolescents in southern Brazil. American Annals of the Deaf 153(4), pp. 349–356. Coalition Sida Des Sourds Du Québec (2006) Deaf communities and AIDS. Paper presented at the XVI International AIDS Conference, Toronto, Canada, 13–18 August 2006. Enwereji, E.E. & Enwereji, K.O. (2008) Disabled persons and HIV/ AIDS prevention: a case study of deaf and leprosy persons in Nigeria. East African Journal of Public Health 5(2), pp. 55–61. Esses, V.M. & Beaufoy, S.L. (1994) Determinants of attitudes
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toward people with disabilities. Journal of Social Behavior and Personality 9(5), pp. 43–64. Gaskins, S. (1999) Special population: HIV/AIDS among the deaf and hard of hearing. Journal of the Association of Nurses in AIDS Care (JANAC) 10(2), pp. 75–78. Giros, S. (2004) Prevention in practise: three HIV/AIDS prevention programs for people with disabilities. In: Gräber, D., HanassHancock, J., Müller, D., Wall, K. & Zimmerman, D. (eds.) Symposium — HIV/AIDS and Disability: a Global Challenge. Koenigswinter, Germany, IKO-Verlag. Groce, N.E. (2003) HIV/AIDS and people with disability. The Lancet 361(9367), pp. 1401–1402. Groce, N.E. (2004) HIV/AIDS and Disability: Capturing Hidden Voices. The World Bank/Yale University Global Survey on HIV/ AIDS and Disability. April 2004. Washington, D.C., The World Bank. Groce, N.E., Yousafzai, A.K., Dlamini, P. & Wirz, S. (2005) HIV/ AIDS and Disability: A Pilot Survey of HIV/AIDS Knowledge among a Deaf Population in Swaziland. New Haven, Connecticut, Yale University of Public Health. Groce, N.E., Yousafzai, A.K. & Van der Maas, F. (2007) HIV/AIDS and disability: differences in HIV/AIDS knowledge between deaf and hearing people in Nigeria. Disability Rehabilitation 29, pp. 367–371. Hanass-Hancock, J. (2009) Disability and HIV/AIDS — a systematic review of literature on Africa. Journal of the International AIDS Society 12, p. 34. Heuttel, K.L. & Rothstein, W.G. (2001) HIV/AIDS knowledge and information sources among deaf and hearing college students. American Annals of the Deaf 146(3), pp. 280–286. HRSA Care Action (2001) ‘HIV/AIDS in the deaf and hard of hearing.’ April 2001. Washington, D.C., U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), HIV/AIDS Bureau. Kvam, M.H. (2004) Sexual abuse of deaf children: a retrospective analysis of the prevalence and characteristics of childhood sexual abuse among deaf adults in Norway. Child Abuse and Neglect 28, pp. 241–251. Kvam, M.H. & Braathen, S.H. (2008) ‘I thought…maybe this is my chance’: Sexual abuse against girls and women with disabilities in Malawi. Sexual Abuse: A Journal of Research and Treatment 20(1), pp. 5–24. Luckner, J. & Gonzales, R. (1993) What deaf and hard-of-hearing adolescents know and think about AIDS. American Annals of the Deaf 138(4), pp. 338–342. Mallinson, K.R. (2004) Perceptions of HIV/AIDS by deaf gay men. Journal of the Association of Nurses in AIDS Care 15(4), pp. 27–36. Monaghan, L. (2006) HIV infection statistics for hearing and deaf populations: analysis and policy suggestions. In: Schmaling, C. & Monaghan, l. (eds.) HIV/AIDS and Deaf Communities. Coleford, Maryland, Douglas McLean. Monaghan, L. (2008) Deaf and HIV/AIDS. Paper presented at the XVII International AIDS Conference, Mexico, dates. Mont, D. (2007) Measuring Disability Prevalence. March 2007. SP Discussion Paper No. 0706. Geneva, The World Bank. Nixon, S. & Hanass-Hancock, J. (2009) The fields of HIV/AIDS and disability: past, present and future. Journal of the International AIDS Society 12, p. 28. Olaleye, A., Olayinka, A.A., Oladapo, A.L., Grace, E.D. & Grace, F.I. (2007) Sexual behaviours and reproductive health knowledge among in-school young people with disabilities in Ibadan, Nigeria. Health Education 107(2), pp. 208–218.
Hanass-Hancock and Satande
Olawuyi, O. (2006) Prevalence of HIV/AIDS among deaf students in Nigeria: causes and remedies. Paper presented at the XVI International AIDS Conference, Toronto, Canada, 13–18 August 2006. Osowole, O. (2000) Effect of peer education on deaf secondary school students’ HIV/AIDS knowledge, attitudes and sexual behaviour. African Journal of Reproductive Health 4(2), pp. 93–103. Peinkofer, J.R. (1994) HIV education for the deaf, a vulnerable minority. Public Health Reports 109(3), pp. 390–396. Pollard, R.Q. (2007) Ethical conduct in research involving deaf people. In: Gutman, V.A. (ed.) Ethics in Mental Health and Deafness. Washington, D.C., Gallaudet Press. Shisana, O., Rehle, T., Simbayi, L.C., Zuma, K., Jooste, S., Pillayvan-Wyk, V., Mbelle, N., Van Zyl, J., Parker, W., Zungu, N.P., Pezi, S. & SABSSM III Implementation Team (2009) South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008: A Turning Tide among Teenagers? Cape Town, South Africa, HSRC Press. Steadman Group (2007) HIV and AIDS Knowledge, Attitude and Practise and Accessibility Study. Nairobi, Kenya, Handicap International. Stevens, H. (1998) AIDS, not hearing aids: exploring the link between the deaf community and HIV/AIDS. Health and Human Rights 2(4), pp. 98–113. Taegtmeyer, M., Henderson, K., Angala, P. & Ngare, C. (2006) Responding to the signs: a voluntary counselling and testing programme for the deaf in Kenya. Paper presented at the XVI World AIDS Conference, Toronto, Canada, 13–18 August 2006. Taegtmeyer, T., Hightower, A., Opiyo, W., Mwachiro, L., Henderson, K., Angala, P., Ngare, C. & Marum, E. (2008) A peer-led HIV counselling and testing programme for the deaf in Kenya. Disability and Rehabilitation 31(6), pp. 508–514. Touko, A. (2008) Sexual behaviour and prevalence rate among the young deaf population in Cameroon. Paper presented at the XVII World AIDS Conference, Mexico City, Mexico, 3–8 August 2008. UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS. Winningham, A. (2008) Lessons learned from more than two decades of HIV/AIDS prevention efforts: implications for people who are deaf or hard of hearing. American Annals of the Deaf 153(1), pp. 48–54. Woodroffe, T., Gorenflo, D.W., Meador, H.E. & Zazove, P. (1998) Knowledge and attitudes about AIDS among deaf and hard-ofhearing persons. AIDS Care 10(3), pp. 377–386.
