World Health Organisation. Prevention of Deafness and Hearing Impairment. Factsheet:Deafness and Hearing Impairment. http://www.who.int/mediacentre/factsheets/fs300/en/index.html. Last accessed 4/11/2009.
Page 24 of 24 6 References CIA World Factbook. Kenya. https://www.cia.gov/library/publications/the-world- factbook/geos/ke.html. Last accessed 5/11/2009.
Gaskins, Susan. 1999. Special Population: HIV/AIDS Among the Deaf and Hard of Hearing. Journal of the Association of Nurses in AIDS Care. 10(2) pp.75-78.
Groce, Nora Ellen. 2003. HIV/AIDS and people with disability. The Lancet. 361, pp. 1401- 1402.
Groce, N. E., A.K. Yousafzai and F. Van Der Maas. 2007.HIV/AIDS and disability: Differences in HIV/AIDS knowledge between deaf and hearing people in Nigeria. Disability and Rehabilitation; 29 (5): 367-371.
Groce, Nora, Aisha Yousafzai, Phindile Dlamini and Shelia Wirz. 2006. HIV/AIDS and Disability: A Pilot Survey of HIV/AIDS Knowledge among a Deaf Population in Swaziland. Disability and Rehabilitation; 29(4): 319-325.
Mallinson, R. Kevin. 2004. Perceptions of HIV/AIDS by Deaf Gay Men. Journal of the Association of Nurses in AIDS Care. 15.5 pp.27-36.
National AIDS Control Council, Office of the President, Kenya. 2008. HIV AIDS Projectionstargeting pop 15 to 24 year old. NACC, Nairobi. http://www.nacc.or.ke/2007/default2.php?active_page_id=307&aid=6&newsid=318. Last accessed 17/11/2009.
National AIDS and STI Control Programme, Ministry of Health, Kenya. July 2008. KenyaAIDS Indicator Survey 2007: Preliminary Report. Nairobi, Kenya.
National Coordinating Agency for Population and Development and Kenya NationalBureau of Statistics. 2008. Kenya National Survey for Persons with Disabilities. Republic ofKenya.
Perlman, Toby S. and Scott C. Leon. 2006. Preventing AIDS in the mid-west: the design and efficacy of culturally sensitive HIV/AIDS prevention education materials for Deaf communities. HIV/AIDS and Deaf Communities. Constanze Schaling, Leila Monaghan (Eds.) Deafworlds: International Journal of Deaf Studies. 22(1) pp 140-162.
Smith AW, Hatcher J, Mackenzie IJ, Thompson S, Bal I, Macharia I, Mugwe P, Okoth- Olende C, Oburra H, Wanjohi Z. 1996. Randomised controlled trial of treatment of chronic suppurative otitis media in Kenyan schoolchildren. The Lancet (348):1128–1133.
Taegtmeyer, M., Hightower, A., Opiyo, W., Mwachiro, L., Henderson, K., Angala, P., Ngare, C. and Marum, E. 2009. A peer-led HIV counselling and testing programme for the deaf in Kenya. Disability & Rehabilitation 31(6) pp 508 — 514.
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49. Has someone ever given you money, drugs, or gifts in exchange for having sex with you?
50. Have you ever given someone money, drugs, or gifts in exchange for having sex with someone?
For not sexually active persons51. You don’t have sex because ___________________________________________________
Yes [You are HIV positive HIV negative Don’t Know]No [Would you like to be tested for HIV/AIDS? Yes No]
53. Do you know the status of your partner?
Persons who are HIV Positive54. You are taking ARV medicine?
55. You attend HIV positive support groups?
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28. Do you need to worry about HIV and AIDS if you always have sex with the same person?
29. Can you tell if someone has HIV and AIDS only by looking at them?
30. Can a pregnant woman with HIV give birth to a baby that is HIV positive?
31. Can you get HIV and AIDS if you share the same needle used by someone that has HIV and AIDS?
32. You don’t need to worry about HIV and AIDS infection because there is treatment.
33. Do you think other Deaf people are worried about HIV and AIDS?
34. Do you know anyone who has HIV or AIDS? The person is Hearing Deaf
35. Do you think a person who is HIV positive should be public about his or her status? Why or why not? 36. Did anyone ever demonstrate to you how to use a condom correctly?
39. Do you use drugs? If “Yes”, select all that apply.
Miraa Viagra Steroids Other____________________
40. Has someone ever__________________________?
Forced you to take off your clothes Touched your body without your permission Forced you to have sex
41. Have you ever _____________________________?
Forced someone to take off his or her clothes Touched another person’s body without his or her permission Forced someone to have sex with you Raped someone None of the above
sex with other objects (example: carrot, banana) sex with animals
43. Who do you prefer having sex with (Sexual identity)?
Questioning or experimenting with your sexual identity Other ____________
For sexually active persons44. How old were you when you first had sex? (Age)_____________________45. In the last 12 months, how many people did you have sex with?
46. The last time you had sex, did you use condoms?
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16. How do you evaluate medical services in Kenya?
Education on sexual and reproductive health and STIs:17. How did you learn about HIV and AIDS, STIs and sexual and reproductive health (Select all that
Video with Deaf actors and sign language
One-on-one counseling(Specify) ____________________18. Which is the best way for you to learn about STIs and sexual and reproductive health? Select all that
Video with Deaf actors and sign language
Knowledge of HIV and AIDS, transmission:19. What is the best way for you to avoid getting HIV and AIDS?20. If you have sex with someone who has HIV and AIDS, without using a condom, can you get HIV and
21. If you use a condom properly, is there less chance to get HIV and AIDS?
22. If you kiss on the mouth someone that has HIV and AIDS, can you get HIV and AIDS?
23. If you deep kiss someone that has HIV and AIDS, can you get HIV and AIDS?
24. If you only have oral sex, can you get HIV and AIDS?
25. Can you get HIV and AIDS if you only have sex with people that you know very well?
26. Can you get HIV and AIDS if you get a blood transfusion?
Page 20 of 24 5 Appendices 5.1 Appendix 1: List of Interview Questions Interviews questions for Deaf Kenyan Community members
Do you have any other Deaf family members? No Yes [Who? __________________________________________________]
How do you communicate at home, with your family? Check all that apply Use sign language Use writing Speak and lip read Use communication system developed by the family Use local language Use gestures
Are you___________ (married)? Single Separated
Have a boyfriend(girlfriend) or partner Have more than one boyfriend(girlfriend). How many (number)? ___________ Are married or live with only one partner Are married to more than one husband(wife). How many (number)? _______
What do you do? Work (describe) _______________________________________________________ Looking for work ______________________________________________________ Are unemployed (reason, if any) __________________________________________ Go to school (level) _____________________________________________________ Volunteer (describe) ____________________________________________________
Where do you live? (name of city/town, etc.)_________________________________
11. You completed (highest level of school) ____________________________________
12. Are you a member of any deaf groups? Select all that apply.
13. How do you communicate with other Deaf people, when they are far from you? Select all that apply.
14. What do you do when you are sick? Select all that apply.
Go to a doctor/nurse who understands KSL Avoid seeking medical help
15. How do you communicate at the hospital? (Select all that apply):
help or support of a friend, family member
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is not a law, in that a person who tests positive for HIV is restricted from telling others. It isonly the health care provider and interpreter that must keep it confidential; it is thechoice of the individual whether to disclose or not. Stigma reduction and openacceptance of Deaf PLWHA can create an environment whereby the Deaf communityis empowered to communicate the realities they face, and strengthen linkages to thewider local community, and mobilize for better care, treatment and support services forDeaf PLWHA.
The issue of sexual assault needs to be addressed in the Deaf community as well, as theDeaf interviewees are both survivors and perpetrators of sexual assault, and this hasserious repercussions for the security of persons and the spread of HIV and other STIswithin the community. Prostitution is also an apparent phenomenon in Deaf community. Whether professionalized or not, persons who are Deaf both give and receive paymentor bribes in exchange for sexual favours, and this can contribute to the spread of HIVwithin the community.
Finally, while rates of HIV testing are high within the Deaf community, it is important notto perpetuate a false sense of security that testing negative means there is no longer arisk. Further exploration of the relationship between risky behavior and HIV testing andcounseling is still needed, to ascertain the present situation, and gauge theeffectiveness and impact of existing services. Meanwhile, educational programs forDeaf persons should stress routine testing, especial y for those with multiple concurrentsexual partners, as well as the importance of knowing your partner’s status.
Recommendations for future research include conducting interviews with Deaf youthsages 15 to 24, since this is one of the most-at-risk-populations (MARP) in Kenya, with thehighest recorded instances of HIV in 2009, and it is projected to rise in the next five years(National AIDS Control Council, 2009). With expanded scope and priority, a morerepresentative survey of Deaf Kenyans, that covers all seven provinces, would also beparticularly informative, as all participants in this research were from Nairobi province,and drawn from a snow-bal ing sample. It would also be useful to address areas such asreligious and ethnic practice in the survey, and assess whether these factors influencebehavior and attitudes, or access to educational and employment opportunities,which then affect Deaf persons’ awareness of HIV issues.
Page 18 of 24
positive, all were attending support groups, and two were on anti-retroviral (ARV)therapy.
The majority of the participants interviewed had been given an HIV test, with 3 (9%)testing positive and 20 (64%) testing negative. 2 (6%) participants had been for testingbut did not know their status at the time of research. 1 (3%) participant had beentested, but chose not to disclose. Of those who had not been tested, 4 (12%) would liketo be tested and 2 (6%) would not like to be tested. The results from this question whereencouraging, as it suggests most of the Deaf community understand the meaning ofHIV-positive and negative sero-status, and have been pro-active enough to go fortesting in the past. Further investigation into the incidence of re-testing for Deaf personsis required in order to determine frequency of testing within this population. In theinterim, future training should emphasize that HIV testing is advisable after every newsexual partner.
More than one third (13; 41%) of those interviewed did not know the HIV status of theirpartner. 9 (28%) said their partner was HIV negative; 3 (9%) said their partner was HIVpositive; and 7 (22%) did not have a current partner, so the question was not asked ofthem. In addition to the importance of self-testing, future training should emphasize thatknowing your partner’s status is equal y as important. Those persons who were HIVpositive were asked if they were taking ARV medication, and 2 out of 3 were currentlytaking the drugs. They were also asked if they were attending HIV positive supportgroups, which all of them were. This indicates that Deaf PLWHA have managed to gainaccess to support networks that meet their communication needs, and this encouragesthem to maintain their psycho-social well-being, as well as reinforces their physicalhealth. 4 Discussion 4.1 Next steps Although the results from the interviews represent a small sample of Deaf adults in Kenya, it offers important insight into the lived experiences of Deaf persons in the context of HIV and AIDS. Future programming should continue to be offered in KSL, the Deaf community’s primary language- whether through seminars with interpreters and Deaf lecturers, VCT HIV testing and counseling in KSL, or a new innovation, educational videos with Deaf actors. Written materials should be complimentary and not the means to an end, and supplemented with clear il ustrations. It is further recommended that Deaf persons are empowered and involved in the development of learning materials to suit their unique needs, and create a sense of ownership of future educative, treatment, care and support programs.
Special attention should be paid to stigma-reduction in the Deaf community, in order toreduce the fear of associating with PLWHA, and encourage people to disclose theirstatus and gain support from their community. It should be clarified that confidentiality
Page 17 of 24
sexually active. While it is encouraging to note that one-third of those interviewed werefaithful to one partner, educational sessions should il ustrate to the Deaf community thathaving multiple concurrent partners increases the risk of HIV transmission.
Exactly half (16, 50%) of the participants reported not using a condom the last time theyhad sex; while 12 (38%) said they had used a condom, and 1 (3%) reported removingthe condom halfway through sexual intercourse. 3 participants (9%) were not asked thequestion, as they were not sexually active. The low condom usage reported from thisgroup indicate that while nearly all had been shown how to use a condom, very fewhad internalized their usage. Educative programs should emphasize that using acondom is the best way to protect sexually active persons from HIV and STIs, andremoving a condom half-way through sexual intercourse voids all protective effects.
More than one third (13; 42%) of the participants only have sex with other Deaf people. Nearly one third (10; 31%) reported having sex with both Deaf and hearing people;while 6 (18%) reported having sex exclusively with hearing people. 3 (9%) participantswere not asked the question, as they were not sexually active. The results il ustrate that ifthere is any perception that having sex with only hearing or only Deaf persons is ameans of protecting yourself from HIV, nearly one in three Deaf persons are having sexwith both Deaf and hearing people, so the spillover effect may be apparent here.
Participants were asked if someone had ever given them money, drugs or gifts, inexchange for sex, and only 5 (16%) said they had been; whereas three quarters (24;75%) said they had never been bribed in exchange for sex. 3 (9%) participants were notasked the question, as they were not sexually active. The question was inverted, todetermine whether the participant had ever given money, drugs or gifts to anotherperson, in exchange for sex. 7 (22%) participants had given some type of bribe toanother person in exchange for having sex with them, but the majority (22; 69%) hadnever done so. 3 (9%) participants were not asked the question, as they were notsexually active. Training sessions should discuss the risks associated with this type ofbehavior, and address strategies for discouraging giving and receiving bribes for sexualfavours.
There were 7 participants who are not currently sexually active, either they had neverhad sex or had abstained for a year or more. When asked to explain why they weresexually inactive, 2 said they were afraid of partners cheating, and did not trust anyone. One said her parents had advised her to wait until marriage; one said she had childrento care for; one had been warned about HIV and wanted to live until old age; and 2said they were fearful of men and prefer to stay home. Training sessions for the Deafshould address the rationale behind individuals’ choices to remain abstinent, in order toempower those individuals to lead by example. 3.9 Access to HIV Testing and ARVs More than three quarters of the participants had been for an HIV test, while one-third did not know the status of their partner(s). Programming interventions should stress the importance of regular HIV-testing along with the importance of knowing your partner’s status. It was encouraging to note that of the three people who self-identified as HIV-
Page 16 of 24
reporting using drugs, 2 used marijuana and miraa9; 1 used tobacco; and 1 used ageneric brand of Viagra.
When asked whether the participant had ever been sexual y assaulted, 23 (72%)reported no incident; while 9 stated they had been assaulted or did not want todisclose. Of those who reported assault, 3 had been forced to take off their clothes; 4had been touched inappropriately without permission; 6 had been forced to have sex;and 4 had been raped; and 1 declined to answer.
The question was then inverted to determine if the participant had ever been aperpetrator of sexual assault. Approximately two-thirds (20; 63%) of respondents saidthey had never participated in any form of assault, while 12 respondents (37%)admitted to perpetrating some form of sexual assault. 4 admitted to forcing anotherperson to take off his/her clothes; 8 admitted to touching another person’s bodywithout permission; 6 had forced someone to have sex with them; and 3 had rapedanother person. One person did not answer the question. The results of this pair of sexualassault questions was extremely important, because within this sample, Deaf personswere more likely to perpetrate sexual assault than they were to be assaulted sexually. While it cannot be said that this sampling is representative of all Deaf people, it isimportant that the issue of sexual harassment and assault is brought to the fore duringeducational sessions on sexuality and HIV with the Deaf community, to re-enforce whatis inappropriate and illegal, and that Deaf persons have the right to report anyincidence of sexual assault.
Nearly all of the participants (30; 94%) identified as heterosexual, 1 (3%) woman said shewas currently only having sex with men, but had had sex with women in the past; and 1woman (3%) did not specify but said she preferred to be alone.
While the majority of the participants were sexual y active, the age of sexual debutvaried widely. 6 participants (18%) became sexual active between the ages of 6 and14. More than one-third (12, 38%) of the participants began having sex between theages of 15 and 23; 7 (23%) began engaging in sexual intercourse between the ages of24 and 32; and only 1 (3%) became sexual active beyond the age of 33. The samenumber of participants (2; 6%) reported not knowing how old they were the first timethey had sex, as those who were not sexually active. Judging by this sample, it is crucialthat young people are educated on sexual health and STIs, as early as primary school,even if it is just in simple terms, since more than half of those surveyed became sexual yactive before the age of 24. Without accurate information, there is no way for them toprotect themselves from HIV, other STIs and unwanted pregnancy.
Participants were asked how many people they had had sex with in the past twelvemonths, and there was a wide range. Approximately one-third (10; 32%) had only onesexual partner in the last year; 8 (26%) stated they had between 2 and 5 differentpartners; 5 (15%) said they had not had sex in the past year; 1 (3%) reported 30 to 40partners; and 1 (3%) reported more than 100 partners in the last year, averaging 3 perday. 3 (9%) participants were not asked this question because they had never been
9 Miraa, or Khat is a flowering plant, native to tropical East Africa and the Arabian Peninsula. Khat contains
an amphetamine-like stimulant which is said to cause excitement, loss of appetite and euphoria. The WHOclassifies khat as a drug of abuse that can produce mild to moderate psychological dependence.
Page 15 of 24
what is inappropriate and il egal, and that Deaf persons have the right to report anyincidence of sexual assault.
Nearly all of those who were interviewed (29; 91%) were of the opinion that someonewho is HIV positive should be private about his or her status and not disclose to others. Only 2 (6%) people said someone who is positive should go public, and one (3%) personsaid they did not know which was right. When asked a follow-up question to explaintheir rationale, a wide variety of responses were garnered. Of those who thought it wasgood to be public about one’s status, one (3%) said one should tell one’s family, so theycan care for the person, and two (6%) said telling others would prevent one fromfeeling stressed and isolated.
The most oft cited reason (14; 44%) one should not be public about his or her status, wasa fear of others’ gossiping, discriminating against, stigmatizing and hating the HIVpositive person. The second most common response (4, 14%) was if one were to telothers, one would become stressed. Two people (6%) said one will die faster if one wereto tell others, while another two (6%) said one would be breaking the law ofconfidentiality and the hospital instructs patients not to disclose to others. Twoparticipants (6%) said they did not know either way if it was better to tell others or keepone’s status private. The following sentiments were each expressed only once, but arenonetheless revealing of the stigma surrounding HIV; “People will see you as a badperson”; “You will commit suicide”; “People won’t have sex with you, and you’ll bealone”; “The Deaf will abuse you when they find out”; “It’s a shame because you aredisabled”. The overwhelmingly negative sentiment towards being openly positivereveals that the Deaf interviewees have either witnessed the hostility experienced bypersons who are openly positive, or they have internalized some of the fears andnegative attitudes associated with being HIV-positive. Future programminginterventions of the Deaf community must seriously address these attitudes, and work atcounter-acting them, by instil ing a sense of solidarity, compassion, empathy,acceptance and understanding within the Deaf community.
Nearly all of the Deaf persons (29, 91%) interviewed reported having been shown howto use a condom correctly, with only 3 (9%) stating they had never been shown. Thiswas a very encouraging statistic, which again demonstrates that awareness aboutcondoms is high in the Deaf community.
Self-reported alcohol consumption among the Deaf interviewees was fairly low, givenmore than three quarters (25, 78%) said they never drink alcohol; 5 (16%) said they drinkone or two times per week; and 2 (6%) said they drink one or two times per month. Alcohol consumption may be low with this group for religious or financial reasons. Similarly, rates of smoking were low, with 28 (88%) reporting they never smoke; and anequal number of participants (2, 6%) stating they always smoke as those who said theyonly smoke sometimes. Drug usage was also low, with the majority (29; 91%) reportingnot using drugs, and only 3 (9%) reporting the use of drugs. Of the 3 persons who
Page 14 of 24 3.7 Attitudes and Knowledge about Living Positively8 Half of all Deaf interviewees were of the belief that, “You don’t need to worry about HIV because there is treatment.” It is therefore important that future programs address this misconception, and emphasize that ARVs are not a cure. Nearly two thirds of participants know someone who is HIV positive, many of whom are Deaf, for that reason, it is imperative that programs also address coping strategies for those with a friend or family member who is HIV positive.
The views of the participants on whether or not they continue to worry about HIV, sincethere is treatment, are nearly split down the middle. 16 (50%) of the participants agreedwith the statement, “You don’t need to worry about HIV because there is treatment;”while 15 (47%) disagreed because they continue to worry about HIV. Only one person(3%) did not know whether to agree or disagree with the statement. When asked abouttheir perceptions about other Deaf persons’ concerns in regards to HIV, in general,more than one-third (12; 38%) of participants said they believed other Deaf persons areworried about HIV. An equal number (9, 28%) felt that other Deaf persons were notworried, as those who believed some are worried, and some are not worried. Only 2persons (6%) said they didn’t know. The perception that HIV treatment makes HIV less ofa concern could mean two things. Either the Deaf interviewees no longer see HIV as adeath sentence, because they know about ARVs and other medications to treatopportunistic infections, and therefore see no reason to worry, or they mistakenlybelieve HIV is curable. Either way, future programming for the Deaf community shouldmake it clear that HIV is still a life-threatening disease, and that taking medication forthe rest of one’s life is by no means a cure. Emphasis should be placed on theimportance of awareness and taking precautions to protect oneself from HIV infection.
More than one third (13, 41%) of participants stated they do not know anyone who isHIV positive. 10 (31%) said they have a Deaf friend who is positive; 4 (13%) have bothhearing and Deaf friends who are positive; 2 (6%) have a hearing friend who is positive;one (3%) has a hearing family member who is positive; one (3%) has Deaf friends,hearing friends and family who are positive, and one person (3%) only knows of ahearing acquaintance who is positive. These results suggest the Deaf interviewees aremore aware of HIV within the Deaf community than outside of it, and they are likelyclose to the people who are HIV positive, so the reality of the disease can be veryapparent to them. It would be appropriate to include in future training for the Deafcommunity on how to cope with a friend or family member who is HIV positive. 3.8 Sexual and High-Risk Behaviours There was a strong sentiment among the Deaf interviewees that someone who is HIV positive should not be public about his or her status. This opinion was often justified due to fear of gossip, discrimination and stigmatization. Future programming interventions of the Deaf community must work towards counter-acting these beliefs. Another area of concern was the self-reported instances of sexual assault, both perpetrated (12) and survived (9) by members of the Deaf community. Programming should also re-enforce
8 Living Positively refers to a persons who has tested HIV-positive, or a person living with HIV &/orAIDS (PLWHA).
Page 13 of 24
answered, “No” as those who responded that they didn’t know; and one person (3%)was not asked the question. This type of sex was unfamiliar to most of those interviewed,which could mean they had never been taught that oral sex is another potential modeof transmission or they are not engaging in this type of sex.
When asked if it is possible to become infected with HIV if you only have sex withpeople you know well, 17 (53%) respondents answered, “Yes” correctly; while 11 (34%)said, “No” and 4 (13%) said they didn’t know. This question indicates there is a falsesense of security among the Deaf with regards to having sex with people to whom theyare close. It should be emphasized that no matter how well one knows a person, theonly way to know if he or she is HIV positive is through an HIV test.
17 (53%) respondents indicated that one can get HIV from a blood transfusion, and 13(41%) said one cannot, while 2 (6%) did not know. There may have been someconfusion with the comprehension of this question, as some Deaf interviewees mayhave understood this to mean coming in contact with another persons’ blood, outsidethe context of a medical intervention, such as a car accident. It is important to clarify tothe Deaf community that the blood transfusion procedure in Kenya is subject to strictgovernment protocol and therefore should be safe, so as not to create unnecessarylack of confidence in the service.
21 (66%) respondents indicated correctly that married people can get HIV. 10 (31%)believed married people could not be infected with HIV and 1 (3%) did not know. Eventhough most participants were correct, future educational training should emphasizethat marriage is not a good way to protect oneself from HIV. 18 (56%) of therespondents said you still need to worry about HIV, if you always have sex with the samepartner; while 14 (44%) said there was no need to worry. Again, it should be reinforcedin training that the only way to be sure about the partner’s HIV status is through HIVtesting, and fidelity.
The majority of those interviewed (25; 78%) indicated correctly that they could not telwho is HIV positive only by looking; while 5 (16%) believed they could identify a personwho is HIV positive, only by looking and 2 (6%) said they did not know. This is anencouraging statistic, but more work still needs to be done to dispel the belief that onecan tell who is positive only by looking at a person.
The majority of the participants (20; 63%) indicated correctly that a pregnant womanwho is HIV positive can pass the virus onto her baby; while 8 (25%) did not believe thebaby would be born positive, and 4 (12%) did not know which was correct. MTCT issomething that is only partial y understood in the Deaf community, so future programsshould be sensitive to this topic, and explain that medication exists to prevent the babyfrom being born positive, but without this intervention, it is more likely the baby will alsobe positive.
More than two-thirds of the participants (26; 82%) knew that HIV could be transmittedvia shared needles, whereas 4 (12%) thought that HIV could not be spread this way,and 2 (6%) did not know the answer. This indicates there is a strong understanding thatHIV is spread through infected blood, but more could be done to reinforce thisinformation, especially in those Deaf communities known to use needles for injectiondrug use in Kenya.
Page 12 of 24
about HIV in the past. However, one means that was mentioned that had not beencited in the previous question, video with Deaf actors, indicates there is an alternativemeans of educating the Deaf community, without the need for training counselors inKSL or coordinating meeting times for seminars, which may conflict with otherobligations, such as working on a small business or caring for children. 3.6 Knowledge of HIV Transmission Through a series of questions about how HIV is transmitted, the majority Deaf interviewees demonstrated by their answers a clear understanding of the “ABC’s”- abstain, be faithful, use a condom. Misconceptions persist about the spread of HIV through kissing, and approximate one-third of participants believed one could not become infected with HIV if one only has sex with people he or she knows well; a similar proportion believed married people could not become infected with HIV. Future training should seek to address these misconceptions.
Participants were asked what they thought was the best way to avoid HIV, and wereencouraged to think of as many ways as possible. 18 persons cited proper condom use;7 said being faithful to one partner; 3 said the use of medicine to protect oneself; 3identified knowing one’s status as a good way to protect oneself; and each of thefollowing means was cited once, “Abstinence”; “An HIV positive person should nothave sex with an HIV negative person, but two HIV positive persons can”; “Eat well tostay healthy”; “Stay alone or at home”; and one person did not have any suggestions. This indicates that the “ABC’s” of safe sex are fairly well-understood in the Deafcommunity, however some misconceptions persist and need to be addressed, such asthe use of medication or eating well to protect oneself.
When asked if they thought it was possible to get HIV from having sex without acondom, 29 (91%) of participants answered correctly, that one can contract HIV; 2 (6%)answered “no,” incorrectly, and 1 (3%) did not know. When asked if proper condomusage could reduce the chances of HIV transmission, 23 (72%) answered, “Yes”correctly; 7 (22%) answered, “No” incorrectly, and 2 (6%) said, “I don’t know”. Again,this demonstrates awareness of the effectiveness of condom use is well understood inthe Deaf community.
Participants were asked if it was possible to become infected with HIV from kissing onthe mouth. 20 (63%) answered correctly, “No”; 7 (22%) responded, “Yes”; 3 (9%) said,“Yes, if there are cuts on the mouth”; and 2 (6%) said they didn’t know. A fol ow-upquestion was asked regarding deep-kissing (exchange of saliva), since the distinctionwas raised in the focus-group discussion. An equal number of participants (11; 34%) saidyou could get HIV from deep kissing, as those who said you could not get HIV fromdeep kissing. 7 (22%) believed that you could get HIV from deep kissing if there werecuts on the month, and 3 (10%) did not know. The results demonstrate there is a strongmisconception about HIV being spread by kissing, which concurs with Groce, et al.’sfindings (2006; 2007). Redressing this myth can have important implications for reducingstigma towards persons who are living positively.
Participants were asked if it was possible to become infected with HIV from only havingoral sex. 15 (47%) answered, “Yes” correctly; an equal number of participants 8 (25%)
Page 11 of 24
unsanitary practices were cited once, as were transport/accessibility problems. Thefrequency of reporting concern about difficulties communicating and distrust ofmedical personnel provides a strong indication of how Deaf persons feel towardsseeking medical help, as they anticipate encountering difficulties and fear theirconfidentiality will be compromised. 3.5 Education on Reproductive Health, STIs and HIV Seminars and workshops were both the most common means by which the Deaf interviewees had learned about HIV, STIs and reproductive health, and the preferred method for learning about such topics. Those surveyed indicated a preference for face-to-face, personal interactions when learning about such topics, and saw potential for a video with KSL and/or Deaf actors as a useful tool for learning about HIV. This suggests that future programming of the Deaf community should focus on delivering messages in a medium Deaf persons can understand- KSL, either in person, through lectures, workshops, or counseling, or through media such as films in sign language.
When asked how they learned about HIV and AIDS, STIs and sexual and reproductivehealth issues6, a significant majority (29) of the Deaf interviewed cited public seminarsand workshops7. 8 reported learning about these topics in school or from teachers; 5had been for one-on-one counseling or to a Deaf VCT centre; 3 said they had learnedfrom television; another 3 said they learned from friends. The following means were onlymentioned once: puppet shows, newspapers, hospital, posters, and social discussiongroups. One person had never learned about these topics, and 2 people mentionedother means. Workshops were the most commonly reported avenue for learning aboutHIV, but it is important to note that the other most common avenues where also face-to-face, personal interactions, either with teachers, counselors or friends. Deaf personscan understand and retain information when it is delivered in their language and in apersonal way. Very few (2; 6%) reported learning about these topics from writtenmaterials.
The respondents were also asked what they thought was the best way for them to learnabout HIV and AIDS and sexual health. They were permitted to provide as many meansas they wanted. Seminars were cited 17 times; one-on-one counseling 10 times; videowith sign language and/or Deaf actors (KSL) was cited 9 times; discussions with friendswas mentioned 6 times; Deaf VCT 5 times; brochures 4 times; newspapers twice; videos,posters, and PLWHA-support groups were each cited once. The preferred modes oflearning also indicate a strong preference for face-to-face interaction. Most probablysaid they preferred seminars and counseling because this was how they had learned
6 Participants were asked to select all means by which they learned about these topics, therefore
percentage values are not given, as many gave multiple responses. 7 Seminars and workshops are a common means of communicating public awareness messages to civilsociety in Kenya. HIV & AIDS seminars are typically funded by a host organization (usually an internationalNGO), and either facilitated by the host development agencies or by a facilitator contracted by the host. The seminars can be as short as half a day or as long as two weeks, and involve of range of activities, suchas capacity-building, leadership skills, and peer-education. Seminars attended by Deaf persons either haveDeaf facilitators or a hearing lecturer with KSL interpreter.
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that most Deaf persons prefer to communicate face-to-face, and very few use text-based modes of communication (SMS, email, or letter) this suggests that writtenmaterials are not the preferred method of obtaining information among the Deaf. This islikely due to low literary rates among the Deaf and the natural propensity of Deafpersons to rely on visual-gestural means of communication. 3.4 Access to and Perceptions of Health Services Nearly all of those interviewed reported using the hospital when sick, and approximately one-third indicated they use the support of a friend or family member to assist them with communication at the hospital. Very few (2; 6%) reported that their health care provider understands some KSL. Without receiving health care information in KSL, there is greater potential for misunderstanding. Also a dependency on others to communicate may leave some Deaf persons feeling uncomfortable about HIV testing, for fear of having their confidentiality compromised. While most of the Deaf interviewees gave a fair or good evaluation to health care services in Kenya, communication barriers and fear of having confidentiality broken or distrust of medical staff were the concerns most often expressed.
More than one third (7; 38%) of the Deaf interviewees indicated that when sick, theyprefer to go to a hospital, buy medicine from a chemist, and pray to God to get better. 6 (19%) stated they only go to hospital and buy medicine; 4 (13%) indicated they useda combination of herbal/traditional medicine, hospital care, medicine from a chemistand prayer. 2 (6%) indicated they exclusively go to hospital when sick; 3 (8%) prefergoing to the hospital and prayer; while 1 (3%) goes to the hospital and uses one othermeans, and 4 (13%) indicated some other combination of health care interventions.
When the Deaf persons interviewed go to the hospital, they seldom go alone, withapproximately one third (11; 34%) indicating they recruit a friend or family member toassist them with communication. 5 (16%) use writing to communicate with health careproviders; 4 (13%) use an interpreter; 3 (9%) use a combination of a friend/familymember and an interpreter; 2 (6%) indicate their doctor or nurse knows some KSL; 1 (3%)uses a combination of writing and gestures; and 5 (16%) use some other combination.5This suggests that there may be a wide margin for miscommunication and poorunderstanding, both on behalf of the patient and the health care provider, since moreoften than not, Deaf persons do not receive health care information in their firstlanguage, KSL. Also the dependency on others to navigate the communication gapscan contribute to reluctance towards seeking medical care, especial y HIV testing, dueto the stigma associated with the virus, and fear of confidentiality being compromised.
Nearly half (15; 47%) of those interviewed give a fair evaluation to medical services inKenya. 13 (41%) saw medical services as good; while 2 (6%) said health services arepoor, and another 2 had no opinion, having never or seldom used such services. Participants were asked to elaborate on their answer to explain their rationale for theirevaluation of medical services; receiving necessary treatment and medicines was cited12 times; communication barriers were mentioned 10 times; fear of havingconfidentiality broken or distrust of medical staff was mentioned 4 times; long wait timeswere cited 3 times; 2 participants had no opinion. Lack of drugs was mentioned 1 time;
5 1 (3%) interviewee indicated never going to the hospital, therefore the question was not applicable.
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(10%) a hearing school, then a school for the Deaf (usually because they became Deaflater in adolescence); 1 (3%) attended a Deaf school, technical and college; 1attended a Deaf school and college; 1 attended a hearing school, then Deaf, thentechnical; and 1 participant had never been to school. For the majority of participants(21; 66%), the highest level of education completed was a technical educationdiploma; 3 (9%) had completed Class 8; 2 had training in computers; and only 1participant had completed each of the following levels: college; part of university; partof technical; Form 4; Primary. 1 participant had not completed any schooling. 3.3 Involvement with the Deaf Community Approximately one third of those interviewed were members of a Deaf community group, however when asked how they communicate with other Deaf persons when not face-to-face, nearly half of all participants stated they do not communicate when separated by distance. Given these two trends, it is worth noting there are several structured or semi-structured avenues, outside of educational institutions, through which Deaf persons can be reached, such as churches, social groups and sports teams. It should be emphasized that Deaf persons seldom rely on text-based modes of communication (SMS, letter, email), and prefer to communicate face-to-face, therefore during any Deaf community engagement activity, written materials should only be supplementary to live, visual-gestural communication, whether through a facilitator skilled in KSL or an interpreter.
An equal number of participants (11; 34%) identified themselves as having membershipswith a Deaf social group, as those who claimed membership with no Deaf communitygroup (11; 34%). 5 (16%) participants declared memberships with both Deaf social andchurch groups; 4 (13%) participants identified membership with Deaf churches; and 1(3%) participant identified membership with both Deaf sports and social groups. In total,21, (66%) of the participants identified themselves as members of one or more Deafcommunity group, therefore indicating there are several structured or semi-structuredavenues through which to reach Deaf persons, beyond educational institutions.
Nearly half (14; 44%) of all Deaf persons interviewed said they do not communicate withother Deaf persons when they are separated by distance. 10 participants (31%)indicated they use Short Message Service (SMS) via mobile phone to communicatewith other Deaf people . The same number of participants, (2; 6%) said they send amessage with another person as a messenger, as those who said they use acombination of SMS and sending messages with another person to communicate whenfar from other Deaf persons (2; 6%). 1 participant (3%) indicated each of the respectivemeans of communication: a combination of sending messages with another personand not communicating when far; a combination of cell phone, SMS, and sendingmessages with another person; SMS and sending letters; and emails and SMS. Given
Form 1-4 (Secondary school), and specialized courses, for example in tailoring, catering, orcarpentry are taught in Kenyan Sign Language.
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None of the participants indicated total reliance on any of the fol owing means ofcommunicating with their family; using a communication system developed by thefamily; using the local language; or using writing. Speaking and lip reading (6; 18%) wasthe means most commonly used by the participants to communicate with their families. The second most common means of communication was a combination of speakingand lip reading and the local language (5; 16%). The third most common means wasgestures (4; 13%), tied with a combination of speaking and lip reading and some KSL (4;13%). Only 2 participants (6%) indicated KSL as their exclusive means of communication,and interestingly, neither indicated they had other Deaf family members (those withother Deaf family members indicated they use KSL, in combination with lip reading orgestures). 4 (13%) participants indicated communicating at home via KSL, incombination with speaking and lip reading, local language and/or gestures. Theremaining 7 (22%) participants relied on some combination of gestures, writing, and/orspeaking and lip reading and/or a communication system developed by the family. This suggests that the majority of Deaf persons’ families does not know KSL, andtherefore are not able to communicate complex messages with their children. This canhave very important implications for providing guidance on issues related to sexual andhigh-risk behavior, as Deaf persons often miss out on the passing down of familial andsocio-cultural values that are not communicated in a language they ful y understand.
14 (44%) of the participants are employed in the informal sector, or self-employed,
for example, selling fruits, washing clothes, tailoring, or carrying water. 8 (25%)participants are working in the formal sector, for example working as a butcher, hotelservices, or at a local company. 6 (18%) are unemployed; 3 (9%) are looking for work;while 1(3%) is volunteering. All participants were recruited within the Nairobi suburbs,with 4 men and 6 women from Dandora, 1 man from Bab’dogo, 1 woman from Nyeri, 5men and 5 women from Kayole, and 5 men and 5 women from Huruma. 3.2 Education The majority of the Deaf persons interviewed had basic education, and some technical skills intended to help them find employment. Given their educational background, highly sophisticated and technical language cannot be applied by most Deaf persons in a professional context. It is appropriate for HIV program interventions targeting Deaf populations to be delivered via school campuses and technical training centers, as most Deaf people attend these institutions. The intervention would therefore reach a wider audience.
Approximately two-thirds of the participants (20; 62%) had attended schools for theDeaf and technical schools for the Deaf4; 4 (13%) attended only schools for the Deaf; 3
4 Schools for the Deaf and Technical schools for the Deaf are typically specialized boardingschools in Kenya, where children and youth from Kindergarten, Class 1-8 (also known as grade),
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instances, questions were added or clarified, and possible responses for closed-endedquestions were modified or added.
The questionnaire was revised based on the input of the two focus groups, and
two pilot interviews were conducted, one with a woman and the other with a man. Based on the answers from the pilot interviews and any difficulties encountered withKenyan Sign Language interpretation, the questionnaires were revised and finalized. The questionnaire consisted of 55 closed and open-ended questions, and participantswere al owed to decline answering any questions if they so wished. Several questionswere only asked of persons who were sexually inactive or HIV positive, and otherquestions were omitted, for various reasons, for example, one participant had neverbeen to the hospital and avoided all medicines, so questions 15 and 16 were not asked.
A total of 32 individual interviews were conducted over a period of fifteen days.
All participants were between the ages of 18 and 50, comprised of 15 men and 17women, from communities in Dandora, Kayole and Huruma. Participants were recruitedon a voluntary basis, through the snow-bal ing technique, drawing on existing socialnetworks from Deaf Empowerment Kenya. 3 Results The results of the interviews are meant to inform the development and enhancement of existing HIV and AIDS awareness, treatment, care and support programming targeted at Deaf populations in slum regions. The results are presented below, and include analysis and recommendations for future programming, based on the sample data. 3.1 Demographic Information of the Target Group Most of the Deaf interviewees were from hearing families, and most relied on speaking and lip reading, and/or the use of the local language to communicate with their hearing family members. The majority of Deaf persons’ families do not know KSL, meaning important socialization on issues such as sexuality and high risk behavior can be lost when only communicated in an oral language, leaving Deaf persons more vulnerable than their hearing siblings.
Only one-quarter of the Deaf population interviewed have work in the formal sector,while the remainder are either employed informal y, looking for work, unemployed orvolunteering. While this survey did not collect information on net-household income, it isreasonable to expect that the majority of those interviewed are from low-incomehouseholds, and HIV-infection would put a significant strain on household resources, asit could lead to increased medical bil s and reduced financial contributions, eventhrough informal means, due to il ness.
All of the participants were between the ages of 18 and 50 years old. Seven werebetween the ages of 18 and 28 (22%); sixteen were between 29 and 39 (50%); and ninewere between 40 and 50 (28%). All of the participants’ parents are hearing, and onlythree have other family members who are Deaf (9%). 21 (65%) of the participantsindicated they have children, all of whom are hearing, and 11(35%) were child-less.
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The objective of this research was to generate a baseline survey of Deaf
Kenyans’ awareness, attitudes and behaviours related to HIV transmission, andaccessibility of treatment and care services. The specific objectives of the researchwere as fol ows:
a) To assess barriers Deaf persons encounter, such as language, in obtaining
information and treatment services related to HIV and AIDS
b) To gain insight into the avenues by which the Deaf community in Kenya is
learning about HIV, and their perception of the best means by which todo so
c) To explore sexual and high-risk behaviours among the Deaf community, to
d) To investigate attitudes and knowledge about living positivelye) To inform the development of and enhancement of existing HIV and AIDS
awareness, treatment, care and support programming targeted at Deafpopulations in slum regions
2 Research Methodology A review of literature was conducted prior to the development of the questionnaire. Drawing on the aforementioned surveys and questionnaires administered to Deaf populations in Kenya and elsewhere, and the difficulties associated with administering questionnaires in Sign Language, a new questionnaire was developed, in order to gain a more comprehensive understanding of the awareness of HIV and AIDS among the Deaf, and accessibility to related educative, treatment and care services. The questionnaire covered nine themes, including demographic information; education; involvement with the Deaf community; access to and perceptions of health services; education on reproductive health, STIs and HIV; knowledge of HIV transmission; attitudes and knowledge about living positively; sexual and high-risk behaviours; and access to HIV testing and ARVs.
Prior to conducting focus-group discussions, a draft of the questionnaire was
reviewed with a Kenyan Sign Language interpreter and a Deaf person fluent in English.3Some questions were adapted to suit the Kenyan cultural context, and ordering ofwords and terminology were adjusted for ease of translation.
Subsequent to the review, two focus group discussions were conducted in
Dandora, with one group of four Deaf women, and another with three Deaf men. Participants were drawn from a snow-ball sampling, utilizing social networks based outof Deaf Empowerment Kenya. The participants were asked not to answer the questionspersonally, but to articulate their comprehension of the question, possible answers, andperceived difficulties other Deaf persons may have in answering the questions. In some
3 The questionnaire was written in English (For a complete list of questions, see Appendix 1). It should be emphasized that KSL cannot be directly translated into English and vice-versa. Therefore, the interviews were administered by the researcher with a Kenyan Sign Language interpreter, and the spirit of the questions was maintained at all times, with further illustrative examples offered to facilitate understanding of the question.
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between the ages of 15-64 in Kenya do not know their status. Given that many Deafpersons are reluctant to go for testing, the number of Deaf persons who are HIV positiveand do not know could be the same or higher.
A combination of the aforementioned factors, along with lower literacy rates -
since English is a second language for most Deaf Kenyans, after Kenyan Sign Language- and a tendency of Deaf persons to have more than one sexual partner at a time,have coalesced to leave Deaf persons more vulnerable to HIV infection. Due to theclose-knit and relatively small population, most Deaf adults in a particular town orregion know one another. Research participants for this study were drawn from 3 urbanslum communities outside of Nairobi centre, which were known to have a highconcentration of Deaf persons (Dandora, Kayole and Huruma). These communities arecharacterized by high rates of poverty and unemployment; low literacy rates andlimited resources for primary school education; under-resourced medical clinics; andpol uted environments, contaminated water resources, poor sanitation; and a lack ofaccessible housing and transportation. Despite these conditions, it is common for Deafpersons in Kenya to migrate from rural areas to urban centers where there are known tobe many other Deaf persons, out of a desire to connect with a community where theycan use their own language (KSL) and develop strong social supports through sharedexperiences. As a result of these social set-ups, behavioural norms and values candevelop, which are unique to the Deaf community. Deaf persons have lackedguidance from parents and teachers who do not communicate well in their language,and consequently they have developed a lifestyle that al ows for free sexualinteractions. Many of the marriages are unofficial and short-lived and the divorceessoon get attached to other partners from within the community. This type of lifestylegreatly increases the risk from HIV infection among Deaf persons (Nyang’aya, 1998: 20).
Several non-governmental organizations (NGOs) operating in Kenya have
sought to address this most-at-risk population (MARP), including Handicap International,Liverpool VCT Care and Treatment, and Deaf Empowerment Kenya (DEK), amongothers, however a comprehensive survey, specifically targeting Deaf persons’awareness, attitudes and behaviours related to HIV transmission, and accessibility oftreatment and care has never been conducted. In 2007, the Steadman Groupconducted a survey commissioned by Handicap International, gathering informationconcerning the knowledge, attitudes and practices among people with disabilities inKenya, in areas surrounding HIV and AIDS. The study was not focused exclusively onDeaf persons, however it il ustrated that while the Deaf may be more aware about HIVthan other disabled groups, misconceptions and stigma persist within the community. Elsewhere in Sub-Saharan Africa, specifically in Nigeria and Swaziland, comparativesurveys have been conducted to assess levels of knowledge and awareness of Deafand hearing persons surrounding HIV and AIDS. Both surveys demonstrated thatknowledge about the transmission and prevention of the HIV virus among Deaf groupsis lagging behind their hearing peers (Groce et al 2007; Groce et al 2006). In Brazil, aquestionnaire on Brazilian deaf and hearing youth’s knowledge of HIV and AIDS andsexual attitudes and behaviours was refined through deaf and hearing focus-groupdiscussions, and administered by a computer-based format that al ows simultaneousvideo translation of Brazilian Sign Language (Libras)(Bisol, et al 2008). These surveys andquestionnaires helped to inform the questions administered for this report.
Page 4 of 24 1 Introduction According to the Kenya National Survey for Persons with Disabilities (NCAPD, 2008), about 4.6 percent of Kenyans experience some form of disability, and about 0.5 percent of Kenyans have some type of hearing impairment. This translates into approximately 195 000 Deaf1 or hearing impaired Kenyans, given a general population of 39 million (CIA, 2009), and persons with hearing impairments make up 11 percent of the disabled population. These estimates are believed to be low, as the World Health Organization estimates persons with disabilities represent about 10 percent of the world’s population, and of these 80 percent live in developing countries (Groce, 2004: 3). Kenya’s forthcoming national census results are expected to convey a more accurate figure for how many persons with hearing impairment are living in Kenya, in the coming months. Acquired deafness in Kenya is largely due to preventable causes, such as childhood middle ear infections, malaria, meningitis and the use of ototoxic antibiotics (Taegtmeyer, 2008; WHO, 2009; Smith et al. 1996). Throughout Kenya, there are registered associations of the Deaf in all the major cities and many municipalities, and there are 41 registered schools for the Deaf in Kenya.
The Deaf community in Kenya is comprised of shared residential school
experiences and deaf churches and social networks, based on a common languageand shared values. Since most Deaf persons in Kenya are born into hearing families,they face many barriers when communicating with parents and siblings. Reading andwriting in English is taught formally in schools for the Deaf, while Swahili and at least oneother “mother-tongue” language is typical y spoken at home, making it difficult to learnto lip-read more than a few basic words. As is common in other Deaf cultures aroundthe world, the Deaf community in Kenya becomes a second family to Deaf people. Theclose-knit nature of the Deaf community, commonly referred to as the deaf“grapevine”2 can make issues of confidentiality, necessary to HIV testing, difficult tomaintain (Gaskin: 1999, 76). Many Deaf persons experience feelings of distrust anddissatisfaction towards the health care system at large, and consequently are morereluctant than their hearing counterparts to seek testing and treatment services(Mallinson, 2004). According to the Kenya AIDS Indicator Survey (KAIS, 2007) there is anoverall HIV prevalence rate of 7.4 percent in Kenya. Nairobi province has the second-highest prevalence rate, at 9 percent, exceeded only by Nyanza province, at 15.3percent. KIAS 2007 also revealed that as many as 4 out of 5 HIV-infected persons
1 Throughout this paper, the word ‘Deaf’ will be capitalized when referring to a person or groupof people which identifies as being affiliated with Deaf Culture; the subpopulation of Deafpeople who communicate in (Kenyan) Sign Language (KSL) and self-identify as sharing asociolinguistic cultural connection, as opposed to a medical problem or disability. The lower-case spelling of ‘deaf’ will identify a person or group of people with a significant hearing loss(Perlman et al 2006, 141-2). Persons who are hard of hearing may also be included in thedefinition of ‘Deaf’, depending on their association with the Deaf community and use of KSL. 2 The term is commonly used in North America to refer to a highly sophisticated social networkwithin the Deaf community, which is used to pass on information quickly, about social issues,ranging from dating relationships, to employment opportunities favourable to Deaf persons, tohealth conditions affecting Deaf persons, to experiences of discrimination by co-workers, familyor businesses, to who won the recent Deaf sporting match, among a multitude of other topics.2(This description is based on the author’s personal experiences, in Canada, Ghana, and Kenya.)
Page 3 of 24 Table of Contents
3.1 Demographic Information of the Target Group . 6
3.3 Involvement with the Deaf Community . 8
3.4 Access to and Perceptions of Health Services . 9
3.5 Education on Reproductive Health, STIs and HIV . 10
3.7 Attitudes and Knowledge about Living Positively. 13
5.1 Appendix 1: List of Interview Questions. 19
Page 2 of 24 Exploring Perceptions of Deaf Persons for Recommendations Towards Effective HIV/AIDS Programming in Nairobi Joanna Shackleton Handicap International, Kenya-Somalia; University of Ottawa, November 30, 2009
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