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ReportonFindingsfromthe

FormativeResearchonHIVDiscordance

Submittedto HealthCommunicationPartnership(HCP)
By MartinSenyonjo&EdwardAtenu

Contents
1.0Background.............................................................................................................................................1 1.2StudyObjectives.....................................................................................................................................1 2.0Methodology...........................................................................................................................................3 3.0FINDINGS.................................................................................................................................................5 3.1Findingsamongindividualsindiscordantrelationships......................................................................... 5 3.1.1UnderstandingofHIVDiscordance.................................................................................................. 5 3.1.2PrevalenceofHIVDiscordance........................................................................................................ 8 3.1.3ExperiencesWhileInDiscordantRelationships............................................................................... 8 3.1.4Factorsthatinfluencecouplestostayindiscordantrelationships.................................................9 3.1.5CommunicationMaterialsforDiscordantCouples........................................................................ 11 3.2FindingsfromindividualswhodonotknowtheirHIVstatusandthatoftheirpartners.....................12 3.2.1KnowledgeandUnderstandingofHIVDiscordance...................................................................... 12 3.2.2PrevalenceofHIVDiscordance...................................................................................................... 14 3.2.3Communicationmaterialsforindividualswhodonotknowtheirstatusandthatoftheir partners...................................................................................................................................................14 3.3FindingsamongcounselorscurrentlyprovidingCHCTinhealthfacilities............................................15 3.3.1CurrentrolesandresponsibilitiesinrelationtocounselingHIVdiscordantcouples....................15 3.3.2CurrentUnderstandingofHIVDiscordance ................................................................................... 15 3.3.3ExperiencesWhileCounselingDiscordantCouples....................................................................... 16 3.3.4Challengesfacedduringcounseling............................................................................................... 18 3.3.5BeliefsandMisconceptionsaboutHIVDiscordanceamongCouples............................................20 3.3.6CommunicationMaterialsforCounselors..................................................................................... 21 4.0Conclusionandrecommendation......................................................................................................... 22 4.1Conclusion.........................................................................................................................................22 4.2Recommendations............................................................................................................................ 22 QuestionsaboutHIVDiscordance.............................................................................................................. 24 Datacollectiontools...................................................................................................................................25 ii

Acronyms
AIC ANC ART ARVs CHCT FGD HCP HIV IEC KI MoH RA STD AIDSInformationCentre AntenatalCare AntiRetroviralTherapy AntiRetroviralDrugs CoupleHIVCounselingandTesting FocusGroupDiscussion HealthCommunicationPartnership HumanImmunedeficiencyVirus InformationEducationandCommunication KeyInformantInterview MinistryofHealth ResearchAssistant SexuallyTransmittedDiseases

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1.0Background
The Ministry of Health (AIDS Control Programme) and its partners designed a national Go together Know together HIV Counselling and Testing campaign targeting married and cohabiting couples. The Couple HIV Counselling and Testing Communication Campaign is a joint partnership through which various organizations contribute resources to a nationally coordinated effort. The Goal of the CHCT campaign is to contribute to a reduction in new HIV infections in Uganda. Health Communication partnership serves as the major communication technical partner, while AIC serves as the major implementingpartner. The campaign is aimed at empowering married and cohabiting couples to assess their risk of getting infectedwithHIV,testtogetherandadoptpracticesthatimprovetheirhealthandisoperationalinthe8 AICdistrictsofKampala,Jinja,Lira,Soroti,Arua,Mbale,Kabale,andMbarara.Itsspecificobjectivesare: (i). ToincreasetheproportionofmenandwomenwhofeelthattheyareathighriskofHIVinfection. (ii). Toincreasetheproportionofmenandwomenwithcorrectknowledgeaboutdiscordance. (iii). To increase the proportion of men and women who engage in HIV/AIDS related discussions with theirsexualpartners. (iv). To increase the proportion of men and women who feel confident that they could go for an HIV testtogetherwiththeirpartner (v). ToincreasetheproportionofcoupleswhotestforHIVandreceivetheirresultstogether. (vi). ToincreasetheproportionofmenandwomenwhoknowwheretoobtainCHCTservices. (vii). To increase the number of service providers with the necessary skills and tools to provide CHCT services

1.1Justificationforthestudy
Aspartofimplementationforthecampaign,inMayandJune2010,HCPinpartnershipwiththeMinistry of Health and AIDS information Centre conducted support supervision to the 8 implementing districts with the overall objective of assessing the campaign implementation process. Results from this supervision indicated that among the major challenges was lack of understanding of HIV discordance among counselors providing services to couples who are in discordant relationships. The counselors expressedwithconcernthattheyfounddifficultyinexplainingthetermHIVdiscordanceaswellasfailed to explain why and how discordance occurred while counseling discordant couples. As a remedy to this difficulty, the support supervision team recommended that IEC materials that provide simple explanationsofHIVdiscordancebedevelopedforhealthworkers. ButbeforeembarkingonthedevelopmentprocessandfollowingthePprocessfordevelopingmaterials, HCPinitiatedaformativestudyamongHIVdiscordantcouples,healthworkersandpeoplethatdonot knowtheirHIVstatus.Thisstudywouldtheninformthedevelopmentprocess.

1.2StudyObjectives
The overall objective of the study was to collect information among couples and counselors about HIV discordance.Specificobjectivesincluded: ToassesscounselorsandclientsknowledgelevelsonHIVdiscordance

To determine which type of materials on discordance would be most useful for counselors and clients Togenerateideasonthecontentneededinmaterialsondiscordanceforcounselorsandclients

2.0Methodology
Atotalof7Focusgroupdiscussions(FGDs)eachcomprisingof712respondentswerecarriedoutinthe districts of Kampala, Mbale and Lira between 24th and 26th May 2011. Respondents of rural/urban mix were mobilized with assistance from AIDS Information Centre (AIC) personnel. In addition, to augment ontheFGDs,18keyinformantinterviews(KIs)wereheldwithcounselorswhoweretrainedinCHCTand those not trained who were selected from at least three facilities. Of the 18, nine had attended training inCHCTandtheotherninehadneverreceivedtraininginCHCT.Ineachdistrict,6KIswereconducted,3 withtrainedcounselorsand3withuntrainedcounselors. The FGDs were conducted by teams each consisting of two experienced research assistants (RAs). The teams included health workers and non health workers. The health workers were outsourced from organizations that provide HIV testing, care and support services around Kampala. The RAs were orientedonusingtheFGDguideandtheKIIguideaswellasreportwritingtechniques. BelowarethedetailsofFGDsandKIsconducted Table1:FocusgroupsandKeyinformantconductedbydistrict District Kampala Language English TypeofRespondent counselors trained in CHCT counselors not trained in CHCT Males in discordant relationships(2035yrs) Females who do not know their HIV status (2035yrs) counselors trained in CHCT counselors not trained in CHCT Females in discordant relationships(2035yrs) Males in discordant relationships(2035yrs) Females who do not knowtheirHIVstatus counselors trained in CHCT counselorsnottrainedin Females in discordant relationships(2035yrs) Males who do not know theirHIVstatus No. KIIs 3 3 of No. FGDs of No. of Total Respondents 3 3 7 12 6

Luganda

1 1

19

Mbale

English

3 3 3 3 18

3 3 8 7 8 3 3 12 9

Lugisu

1 1 1

23

Lira

English

Luo

1 1 7

21

Total

SelectionandscreeningofFGDrespondents AICbranchesmobilizedrespondentswiththefollowingcharacteristics; 1. CounselorstrainedinCHCT Received training in the national training curriculum sponsored by the Ministry of Health in October2009 CurrentlyworkingatahealthfacilityimplementingtheGotogether,KnowTogethercampaign Hasexperienceofcounselingatleastonediscordantcouple RecruitedfromAICbranchesandotherhealthfacilitieswithintheselecteddistrict Maleorfemale 2. CounselorsnottrainedinCHCT Currently working as counselor in a health facility (implementing or not implementing the Go TogetherKnowTogethercampaign HasnotreceivedtrainingintheCHCTtrainingcurriculum Hacounseledatleastonediscordantcouple Maleorfemale 3. Malesandfemalescurrentlyindiscordantrelationships Marriedorunmarried,cohabitingornotlivingtogether Aged2035years 4. MalesandfemaleswhodonotknowtheirHIVstatusandthatoftheirpartners HavenotaccessedCHCTtogetherwiththeirpartners Marriedorunmarried,cohabitingornotlivingtogether Aged2035years Note: Prior to conducting FGDs and KIIs RAs screened the mobilized respondents for the above listed characteristics.Inadditionnotnotetaking,allFGDsandKIIswererecordedforreference. ResearchVenues AIC hosted the FGDs at their branches while the KIIs were conducted at the places of work of the selected health workers. The venues for FGDs were void of interruptions like noise and private enough to allow people to freely express their views without fear. In Kampala the health facilities visited were AIC Kisenyi, Naguru Teenage Centre and Kawempe Home Care whilst in Mbale, AIC Mbale, Namatala Health Center II and Bufumbo Health Center IV were visited. Ngetta Health Centre III, Amach Health CentreIVandLiraRegionalReferralHospitalwerevisitedinLira.

3.0FINDINGS
Discussed in this section are results of the FGDs and KIs conducted in Kampala, Lira and Mbale districts. This section is divided into three parts that is; findings from people in discordant relationships, findings frompeoplewhodonotknowtheirHIVstatusandthatoftheirpartnersandfindingsfromcounselors.

3.1Findingsamongindividualsindiscordantrelationships
Theresultsherebelowarefrom4FGDscarriedoutwith7men(Kampala),12women(Lira),7menand8 women(Mbale)agedbetween2035yearsandarecurrentlyindiscordantrelationships. 3.1.1UnderstandingofHIVDiscordance Generally, results show that respondents understood HIV discordance as a term used to mean a situationwheretwoloversorpartnerslivingtogethergoforanHIVtestandfindthatoneofthemisHIV positivewhiletheotherisHIVnegative. It is when two people, husband and wife go for HIV testing and they get different results with one of them being HIV positive and the other HIV negative. (Male in discordant relationship, Kampala) OnerespondentfromKampalafurtherdefineditasasituationwhenoneofthepartnerswhohavegone for an HIV test is reactive while the other is non reactive. He further explained that reactive means a personisHIVpositiveandnonreactivemeansHIVnegative There are words that are normally used, reactive and non reactive. Reactive that is positive non reactive is negative, counselors usually use them (Male in discordant relationship, Kampala) Male respondents in Mbale added that for a relationship to be called discordant there must be regular unprotectedsexbetweenthepartners/lovers.Theyexplainedthatwhenthetwoseparateifoneperson hasbeenfoundHIVpositive,thentheyceasetobeinadiscordantrelationship. Youcantbediscordantwhenyouaresingleandyourpartnerhasleftyou.(Maleindiscordant relationship,Mbale) HowDoesHIVDiscordanceOccur? From this study it was evident that respondents have a number of different theories to explain how HIV discordance occurs. They theorized that HIV discordance occurs due to people having strong/weak blood types, it is by chance, it is due to unfaithfulness/promiscuity, genetic factors, foreplay, that the viruscouldbehiding,presenceofotherSTDsandthatGodchoosestoprotecttheHIVnegativepartner. Strong/WeakBloodType Respondents reasoned that some people have strong blood types while others have weak blood types and that those with strong blood types do not easily get infected with HIV while those with weak types caneasilygetinfectedwithHIV. Some people have strong blood and others have weak blood. Strong blood is thick and weak bloodisthin.Justlikejuiceifyouwanttoquenchyourthirstquicklyyougoforthedilutejuice,so I think even this HIV goes for the thin one where it can easily pass. (Male in discordant relationship,Kampala) 5

Chance Chance was another explanation raised by respondents. They mentioned that discordance occurs by chance because a person does not get HIV every time they engage in sex but if the couple continues havingunprotectedsexthentheuninfectedpartnermayeventuallygetthevirusaswell As we walk one can hit his foot on a stone and another does not. That is how discordance comes about some may get HIV and another may not. It is just chance (Male in discordant relationship,Mbale) Me I think that a person not getting infected is by chance, the first time you have sex you may notgetit,butifyoucontinuehavingunprotectedsexwithaninfectedpersonyoumayeventually getinfected.(Maleindiscordantrelationship,Kampala) Unfaithfulness/Promiscuity Respondents also reasoned that the person who is HIV positive and in a discordant relationship has probably been promiscuous and unfaithful and may be he/she got the HIV from another person and they have never had sex with their regular partner since then so when they go for an HIV test they turn outtobediscordant. You may find that one of these married people has been busy so had no time for sex with their partner so this partner may secretly have sex with another person so when they go for an HIV test they find that that one who slept around is HIV positive. (Male in discordant relationship, Kampala) VirusisUndetectable ItwasevidentthatrespondentsthinkthattheHIVnegativepartnerispositiveaswellbutthevirus cannotjustbedetectedatthemomentbecauseitishidingsomewhereinthebody.Theyaddedthat withtimethevirusbecomesdetectable. For some people the virus shows differently at different times and some people have their virus hidinginthespinalcord.(Femaleindiscordantrelationship,Lira) Onepartnermighthaveitbutitwasnotseen.Itmightbethereinthebodylater.(Femalein discordantrelationship,Mbale) Genetics/ShapeofCD4Cells It was also mentioned that Genetics also play a big role in the emergence of HIV discordance. A respondent from Kampala explained that some people have CD4 cells which do not have HIV receptors sotheycan noteasilygetinfectedwith HIVandthosewhohaveCD4cellsthat havereceptorseasilyget infectedwithHIV. They say that HIV gets into someones body through the CD4 cell. I hear these cells have receptorssoifyourCD4cellsdonothavethesereceptorsitishardforyoutoacquireHIV.(Male indiscordantrelationship,Kampala) Majority respondents from Lira on the other hand attributed this occurrence to the shape of the CD4 cells. They mentioned that people have CD4 cells of different shapes; some are oval while others are round.TheyaguedthatthatthosewithovalcellseasilyacquireHIVwhilethosewithroundcellsdont. IfyoufindthattheCD4cellsareoval,youbecomeHIVpositiveandtheonewithcircle/round CD4cellsremainsnegative.(Femaleindiscordantrelationship,Lira) 6

Sufficient/InsufficientForeplay Sufficient/insufficient foreplay was fronted as one of the ways how HIV discordance occurs. Respondents explained that that if a couple has sufficient foreplay before having sex the chances of bruising ones partner during the act of sex are reduced therefore, the infected partner may not transmittheHIVtotheuninfectedpartner. For me from what I have heard, if you have sex with your wife when you have not properly prepared her (foreplay) you may bruise her in the act of sex and you give her the virus but if you prepareherwellyouwillnotgiveherthevirus.(Maleindiscordantrelationship,Kampala) GodsProtection ItalsosufficedthatmajorityoftherespondentsfromLiraattributetheoccurrenceofHIVdiscordanceto Godsprotection.TheysaidthatGoddecidesthattheHIVnegativepersonstaysnegativeandthatinthe occurrence of discordance God has decided that people in a relationship do not suffer/die at the same time. If they have failed to get the virus in the blood sometimes it means that God has decided that thatpersonstayswithoutthevirus.(Femaleindiscordantrelationship,Lira) Some people are gifted and God does not allow us to go at the same time. (Female in discordantrelationship,Lira) PresenceofOtherSTDs Some respondents in Mbale also said that discordance comes about when one person has STDs that give them sores in their private parts so when they have sex, they easily get infected with HIV unlike theirpartnerwhomaynothavesoresintheirprivateparts. IsHIVDiscordancePermanent? When asked if discordance is a permanent situation, majority of the FGD respondents said that discordance is not a permanent situation. They argued that the uninfected partner may eventually get infected with the HIV if they continue having unprotected sex and that if the uninfected partner has other STDS or wounds in their private parts it is easier for him or her to acquire the virus. They added that the more times an HIV negative partner has unprotected sex with an HIV positive partner the greaterhis/herchancesofbeinginfectedwithHIV. If you go for an HIV test and you find that you are HIV discordant and you continue having unprotected sex a time comes when the HIV negative partner also becomes HIV positive. (Male indiscordantrelationship,Kampala) Some respondents from Kampala and Mbale said that discordance may be a permanent situation if the infected partner starts and continues taking ARVS. Others in Lira felt that discordance may be permanent because of the shapes of the cells. They argued that if someones cells are round the virus diesandiftheyareovalitdoesnotdie. ItispossibleiftheHIVpositivepartnerisonARVsbecausethevirusdisappearsandhidesinthe joints, it is therefore weak but if he/she is not on ARVs they can easily transmit it to their partner.(Maleindiscordantrelationship,Kampala) If you go for testing and you get discordant results, sometimes it means that the negative person is the one who has infected you but the virus dies after 72 hoursbecause I understand

the cells of our bodies are different. If yours are oval you get the virus but if yours are round the virusdies.(Femaleindiscordantrelationship,Lira)

3.1.2PrevalenceofHIVDiscordance
AllFGDrespondentsfromthethreestudydistrictsagreedthatdiscordanceisacommonphenomenonin Uganda nowadays. On average they estimated that out of every 100 couples who have tested for HIV between 740% turn out discordant. Respondents further stressed that this value might even be much higher because most people fear testing for HIV. Respondents from Kampala mentioned that they also have discordant couples clubs and that if it was not common then such clubs would not be having members. In Uganda discordance is very common because even here at AIC we have discordant couples clubs. If it were no common then this club would not be existing. (Male in discordant relationship,Kampala)

3.1.3ExperiencesWhileInDiscordantRelationships
WhenDidYouLearnThatYouAndYourPartnerAreHIVDiscordant? When respondents were asked the above question; it was generally noticed that they came to know about their discordant nature between the years of 2000 and 2009. In Lira and Mbale it was not clear howlongthesepeoplehadstayedintheirrelationshipsbeforediscoveringthattheyareHIVdiscordant. In Kampala however it was observed that respondents spent as many as 14 years in marriage before discovering that they are HIV discordant with the majority discovering after about 57 years while in longtermrelationships. Wecame toknowthisin 2004but we had stayed together since 1990,shewentand testedbut me I refused but when I started falling sick I decided to go and test. When I was tested I was found to be HIV positive so I got courage to tell her to go with me and we discovered that we werediscordant.(HIVpositivemaleindiscordantrelationship,Kampala) Itested7yearsaftermywifehadknownshewasHIVpositive,meIthoughtthatIwasalsoHIV positive but when she pressured me to go and test with her it was discovered that I was HIV negative. Earlier on she was bitter with me because she was accusing me of infecting her with HIV.(HIVnegativemaleindiscordantrelationship,Kampala) Itwasfurtherobservedthatmanyofthepeopleindiscordantrelationshipscometoknowoftheirstatus when one of them starts feeling sick recurrently and when the usual drugs have failed to cure their ailments, they decide to go for HIV testing. Further still it was noted that Some partners go for HIV testing alone without the knowledge of their partners so when the other partner finds out that their partner went for HIV testing and are HIV positive they decide to go for the test together. Others come to know during antenatal visits. Usually when an expectant mother goes for ANC she is requested to comealongwithherhusbandsotheygettestedforHIV. In2008IfeltsickandwasgivennormaldrugsbuttherewasnochangesoIwentandtestedfor HIV but I was positive. When I got the results I just gave them to my husband and the man said its fine and we will also go for testing when he went for testing the man was negative (HIV positiverespondentindiscordantrelationship,Mbale) 8

My husband started coughing heavily in 2004, he would cough and vomit a lot, his body and legsgotswollenwewereadmittedforthreeweeks.In2005hegotsickagain,hewentfortesting and started ARVs without telling me. One time people from AIC came around and told me to go for testing. I went two days after that and I was HIV negative. (Female in discordant relationship,Lira) One day when I was pregnant with my second child I went to hospital for testing and they refused to work on me, they sent me for my husband. When he came we were tested and he turnedoutHIVpositiveandIwasnegative.(Femaleindiscordantrelationship,Lira) HowDidYouFeelWhenYouDiscoveredThatYouAreHIVDiscordant? Upon finding out that they are HIV discordant, respondents had mixed feelings; some were surprised, some felt bad, others feared, others did not feel bad but were sympathetic for their wives, others felt pain. Majority HIV positive male respondents said that they were not surprised neither did they feel bad. MostofthesemenfurthersaidthattheyhadaclueoftheirHIVstatusandthereforewerenotscaredof any result. Some HIV negative males also said that they did not feel bad but however felt sympathy for theirpartners. I did not feel bad since I had been counseled, I did not fear anything because I was told that it wasnt the end of life I even reflected on other people who were HIV positive and got courage to live.(HIVpositivemaleindiscordantrelationship,Kampala) IdidnotfeelsobadwhenIfoundoutbutmywifecriedformanydaysafterwefoundout.Iwas verysympathetictomywifeandIhadtoencourageherandidentifywithhersinceshewasthe HIVpositiveone.ImadesurethatIdidnotchangethewayItreatherandIkeptourstatus confidential.ActuallyItoldsomeonetwoyearsafter(MaleHIVnegativeindiscordant relationship,Mbale) Majority HIV positive and HIV negative women as well as HIV negative men felt pain and fear upon learning that they were in discordant relationships. The HIV negative respondents even contemplated leavingtherelationshipsbutdecidedtostaybecauseofthecounselingtheyhadreceived. I felt that I had lost the love for the husband and I thought that best would be to get another manandallwouldbewellandgoodbutthemanatthecliniccounseledmeandmymanstarted taking drugs and the man asked me to get condoms to use every time we have sex (HIV negativefemaleindiscordantrelationship,Mbale) IfeltpainwhenIgotoknowthatIwaspositiveandmyhusbandwasnegative.Hetoldmetogo with my luggage to where I got the HIV from because he did not have HIV in his house. (HIV positivefemaleindiscordantrelationship,Lira)

3.1.4Factorsthatinfluencecouplestostayindiscordantrelationships
Asked whether they considered separating when they discovered they were HIV discordant majority (22/34) of the respondents said that they did not consider separating. The other 11/34 said that they contemplated separating because HIV discordance was a new phenomenon to them and were not sure of how to survive and have children in their status. However all the respondents stayed and are still 9

together because they were in formal marriages, already had children together, had received good counseling, had support from partners or had acquired property together and others had great love for theirpartners. Children Having children was the most commonly cited factor that compelled discordant partners to continue staying together. Most of the respondents mentioned that they decided to continue with the relationshipbecausetheywantedtotakepropercareoftheirchildrenandseethembecomebigpeople. Theyaddedthattheydidnotwantthemtobebroughtupbystepmothersorstepfathers IwhenIdiscoveredthatmywifewasHIVpositiveandInegative,Ididnotwanttoleaveher becausewealreadyhadchildrenandIdidnotwantthemtohaveanothermother,eventhelove Ishowedherincreased.(HIVnegativemaleindiscordantrelationship,Kampala) IthoughtoflivingmyHomeandchildrenbehindbutstillwhowouldtakecareofthem. (Femaleindiscordantrelationship,Lira) We found out that we were expecting a child even when we were discordant. We just had to stayasateamforthebabytillnow(HIVPositiveMalerespondent,Mbale) FormalMarriages/FearOfGod Moral factors (formalized marriages/fear of God) were also seen to be important factors in keeping discordant couples together. Respondents said that since they were formally married and had made vows before God; for better or for worse they decided to stay together not to break the promise since theworsebitofithadcome.Someweddedwomenalsosaidthattheystayedtogetherbecausetheydid notwanttolosetheirweddedhusbands.. Ididntwanttolosemyplaceformyweddedman.(Femaleindiscordantrelationship,Lira) We had made vows before God, for better or for worse now the worse had come. (HIV negativemaleindiscordantrelationship,Kampala) I realized that there are qualities that I first saw in my wife when I married her and just that I found that we were discordant did not take away these qualities and I made sure that we remained together. We had even said that in riches and poverty, sickness and health also and thiswassicknessandwehadtokeepthat(HIVnegativemaleindiscordantrelationship,Mbale) GoodCounseling The role played by counseling in keeping discordant couples together was not without mention. A number of respondents said that when they discovered that they were HIV discordant they considered separating but the good counseling they got from counselors and even on radios made them decide to staytogetherbecausetheygottoknowofotherwaysofsurvivingliketakingARVSandusingcondoms. After getting counseling we decided to join groups for discordant couples where we got encouraged and we learnt more on how to survive together (HIV positive male in discordant relationship,Kampala) For me Radio talk shows, counseling at AIC helped me a lot, so I decided to stay. (Female in discordantrelationship,Lira) 10

MeIfirstaskedthedoctorthewaywecanliveforlongandwhenwereadvisedtouseacondom anditwillbeokay,Istayed(Femaleindiscordantrelationship,Mbale) JointProperty/NoOneToRunTo Respondents also said that they decided to stay together because they had investments together. Separating would mean that they separate the assets they had accumulated together; something most oftherespondentssaidtheywereuncomfortablewith.SomerespondentsfromLirafurtheraddedthat they had no one to run back to. A respondent from Mbale also said the he decided to stay because his wifehadtoldthewholevillagethathewasHIVpositivesohecouldnotgetanotherwoman Atmyage,Ihavenoparents,mychildrenarebigotherareyoung,Ihaveland,soIdecidedto stay.(Femaleindiscordantrelationship,Lira) OurInvestmentshadgrown.Ihaveacarpentryshopandmywifehasasalonandthese businessesareoursasafamily.Ifweseparate,wealsohavetoseparatethembutwedecided thattobenefitfromthemwell,wehavetostaytogether(HIVpositiveMaleindiscordant relationship,Mbale) SupportFromTheirPartners Supportfrompartnerswasanotherfactormentionedbysomeoftherespondentsmostlywomen.They decidedtostaybecausetheirpartnersweresupportive. Acceptanceofmyhusbandtogoforcounselingservices/testingtogetherandnotdenyingthe truthbecauseourchildrenareablessingfromGodandweareahappyfamilynow.(Femalein discordantrelationship,Lira)

3.1.5CommunicationMaterialsforDiscordantCouples
From all the three study areas the most commonly mentioned communication materials were posters, billboards,videoandaudiotestimonials.Howeverinaddition,doortodoorsensitizationofpeopleabout HIVdiscordancewassuggestedbymostrespondents. Majority respondents felt that Video and audio testimonials of people in discordant relationships would be the best materials. They added that these testimonials would encourage them to continue pushing oninlifeas thecouplesgivetestimoniesabouttheir status,howtheylived theirlivesbeforefindingout thattheywerediscordantandhowtheylivetheirlivesafterdiscoveringthattheyarediscordant. Door to door sensitization, respondents said, is good and can best be done by equipping People in discordant relationships with knowledge to talk to other people about discordance because they will talk to people out of their experience and they feel for the people. They added that in such sensitizations someone can easily ask a question and get a ready answer. Respondents also suggested that gatherings such as in churches, schools, shows for musician albums launches could be taken advantage of. Other mentioned materials/avenues of communication were flyers, tshirts, radio talk shows,flipcharts,phonemessages,anddrama. 11

InformationtoBeCoveredInMaterial Respondents from all three districts suggested that information about the following should be covered intheabovementionedmaterials; Thetruemeaningandthecausesofdiscordance TheexistenceofHIVandHIVdiscordance TheimportanceofcouplestestingforHIVtogether Theimportanceofdisclosureinadiscordantrelationship Howpeopleinadiscordantrelationshipcanlivehappilytogether HowtheHIVnegativepartnercanbepreventedfromgettinginfectedwiththevirus HowHIVdiscordantcouplescanhavechildren TheavailabilityoffreeCHCTservicesatAIC AdvicetoOtherHIVDiscordantCouples Respondentsadvisedtheirfellowfriendsindiscordantrelationshipstodothefollowing; To remain faithful to their partners. They said that those who are HIV positive should not have intentions of spreading it to other people as they may get reinfected, they should always remembertousecondoms People who are not in discordant relationships or do not have HIV to believe what they tell them. They added that people nowadays do not want to believe when someone tells them that he/sheisHIVpositive. TocontinuegoingforHIVtestingandcounselingtolearnmoreaboutHIV To Support one another because Survival of a discordant couple is a responsibility for both partnerseitherHIVnegativeorpositive. Trustinthebibleforhopeforthefuture.

3.2FindingsfromindividualswhodonotknowtheirHIVstatusandthatoftheirpartners
The results under this section are from 3 FGDs carried out with 9 men in Lira, 12 women from Kampala and 8 women in Mbale aged 2035 years and have never tested for HIV separately and with their partners.

3.2.1KnowledgeandUnderstandingofHIVDiscordance
AbouthalfofthetotalnumberofrespondentshadanideaaboutHIVdiscordance.Theymentionedthat they had seen couples in their communities where one of the partner is HIV positive and the other negative.TherestcompletelydidnothaveanyideaaboutHIVdiscordance. I saw a couple, they tested, the man was HIV positive and the woman was negative but as they continued staying together the woman refused sex and it brought a lot of quarrels between them.(Male,unawareofHIVstatus,Lira) AlmostallrespondentsfromMbaleandmorethanhalfthenumberofrespondentsfromLirahadseen orheardmessagesaboutHIVdiscordance.Theymentionedthattheyheardorsawthemessageson radio,billboards,athealthcenters.Howeverwhenaskedwhatmessagestheyhadheardorseen,none ofthemcouldremembertheexactmessages.

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OntheotherhandallrespondentsfromKampalasaidthattheyhadneverheardorseenanymessages aboutHIVdiscordance. Is it Possible for a Couple to be Having Unprotected Sex for Many Years and Still Have Different HIV TestResults? After explaining to the respondents the meaning of HIV discordance, the above question was asked and majority (more than half) of the respondents said that it was possible for people to have unprotected sex for many years and still have different HIV test results. Others said that it was not possible for a couple to have unprotected sex for many years and still have different HIV test results. They said that the HIV negative partner also has the virus but it is hiding somewhere in the body but will later be detectable. HowDoesHIVDiscordanceOccur? Respondents reasoned that HIV discordance can happen in the following situations; when someone has strong/weak blood type, has other STDs, insufficient foreplay, and round/oval blood cells. Others said it isbychancewellassomeofthemdidnotknowhowitoccurs. Strong/WeakBloodType:MajorityoftherespondentssaidthatsomepeoplehavebloodgroupOwhich is very strong and resistant to HIV so it is difficult for such people to get infected with HIV. Those with bloodgroupOremainHIVnegativewhilethosewithotherbloodtypesbecomeHIVnegative. If one person has blood group O, they have strong blood and dont get HIV but the one with groupAcangetHIVfaster(FemaleunawareofHIVstatus,Mbale) Presence of Other STDs: Respondents also mentioned that presence of other sexually transmitted diseases predisposes one to HIV infection compared to someone who does not have other STDs. They reasoned that STDS bring wounds in the persons private parts which make it easier for HIV to enter someonesbody. Chance: It was also mentioned it is by chance that one partner remains HIV negative while the other is positive.RespondentsmentionedthatGodcouldbeprotectingtheHIVnegativepartnerfromthevirus. Sufficient/Insufficient Foreplay: Respondents also mentioned sufficient/insufficient fore play also plays a role in the occurrence of HIV discordance. They argued that if people have sex when they are well lubricatedtheHIVpositivepartnercannoteasilytransmitHIVtotheHIVnegativeonebecausethenthe chancesofonepartnergettingbruisedareminimal. There is a doctor who said that if a woman is well lubricated then the man can not bruise the womantogiveherthevirus.(Femalerespondentunawareofstatus,Kampala) Shape of Blood Cells: Majority respondents from Lira argued that some people have round cells and others have oval cells, those with oval cells can easily acquire HIV while those with round cells cannot. Thereforesomepeoplewillbepositiveandothersnegative. It happens that the ones with oval White Blood Cells do not get it while those with round cells getitbecauseGodmadeitlikethat.(Maleunawareofstatus,Lira) AfewrespondentsconfessedthattheyhadnoideaofhowHIVdiscordanceoccurs. EEhhhformeIdontknow(FemaleunawareofHIVstatus,Mbale) 13

3.2.2PrevalenceofHIVDiscordance
All respondents from three districts agreed that discordance is not a common phenomenon in Uganda. They however acknowledged the existence of HIV discordance and stressed that it is not common as theyhavenotseenmanysuchcouples.Theyestimatedthatoutof100coupleswhohavetestedforHIV, between120%arediscordantbutmajorityputthispercentageatlessthan7%.

3.2.3Communicationmaterialsforindividualswhodonotknowtheirstatusandthatoftheir partners.
The most commonly mentioned communication materials were posters, charts and brochures. However in addition to these materials other commonly mentioned avenues were radio talk shows and communitysensitizations. Othermentionedmaterials/avenueswereSMS,playsandT.Vmessages Informationforinclusionintheproposedmaterials Respondents from all places mentioned that information about the following should be included in the abovementionedmaterials/avenuesofcommunication; How discordant couples can survive in their status and how the uninfected partners can be protectedfromgettingHIV Themeaningofdiscordanceandhowitoccurs WhereHIVpositivepeoplecangetdrugsfromandtheimportanceofadherence Theneedforpeopleinadiscordantrelationshiptosupporteachother. 14

3.3FindingsamongcounselorscurrentlyprovidingCHCTinhealthfacilities

The study also included counselors who are currently providing counseling services to discordant couples with the objective of understanding their current experiences and challenges they face while counseling HIV discordant couples. A total of 18 counselors both trained and untrained in couple HCT were interviewed as key informants. In Kampala, the counselors were mobilized from 3 health facilities namely; AIDS Information Centre, Naguru Teenage Center and Kawempe Home Care Initiative; In Lira, theyweremobilizedfromNgettaHealthcentreIII(onetrained),AmachHealthCentreIV(onetrained,2 not trained) and Lira Regional referral hospital (one trained, one not trained) while in Mbale, they were mobilized from from AIC (1trained,1 not trained), Namatala Health center III (1 trained, 1 not trained) and Bufumbo Health centre IV (1, trained, 1 not trained). The counselors were asked questions ranging their roles and responsibilities, their experiences with counseling, beliefs and misconceptions about HIV discordance, and recommendations for materials to be developed among others. This section presents findingsamongthecounselors,

3.3.1CurrentrolesandresponsibilitiesinrelationtocounselingHIVdiscordantcouples
Counselorsmentionedthefollowingastheirrolesandresponsibilitiesinprovidingcounselingservicesto HIVdiscordantcouples: Offering psychosocial support to discordant couples through counseling them about preventive measures like condom use, and making them appreciate the results of the test and also advise themtoretestaftersomeweekstoruleouttheissueofwindowperiod. Referringdiscordantcouplestootherhealthfacilitiesincaseofasituationtheycouldnothandle Distributing information materials to discordant couple and let them know of the services and activitiesavailablefrodiscordantcouplesatthefacility Mobilizingdiscordantcouplestojointhecoupleclubandparticipatinginposttestclubactivities An untrained counselor from Lira added that it is also his role to ensure privacy, confidentiality and give clientsinformationbeforeandaftertesting.

3.3.2CurrentUnderstandingofHIVDiscordance
In all the three study areas all counselors (trained and untrained) had a clear understanding of HIV discordance. They mentioned that they understood HIV discordance as a situation where two partners who have been having unprotected sexual intercourse go for an HIV test and results turnout that one is HIVpositivewhiletheotherisHIVnegative. Is where two people staying together, having unprotected sex and have children, their test results show one HIV positive and the other negative even after the third month of testing. (Untrainedcounselor,Lira) Two people who are married but when they test, one is negative and the other is positive yet theyhavebeenhavingunprotectedsex(Untrainedcounselor,Mbale) HowdoesHIVDiscordanceoccur? In response to clients question of how HIV discordance occurs; all counselors (trained and not trained) confessedthatthequestionofhowdiscordanceoccursishardtoexplaintoacouplebecausethereisno clear explanation of how it really occurs. Majority correctly and clearly said that they would tell the clientsthatitisbychanceorprobablytheHIVnegativepartnerisstillinwindowperiod.Inadditionthey 15

mentioned that they would further let the clients know of the need to protect the uninfected partner fromHIVandinformthemthatresearchisstillongoing. Counseling a discordant couple is a challenge because there is no genuine explanation of how discordance occurs, but we just inform the couples about the studies done and tell them that their role is to protect the uninfected partner from getting infected, I also talk about chance issues.(Trainedcounselor,Kampala) That means negative person has just acquired the infection so she/he has to come back for another test. That person might still be in the window period so we cannot detect HIV until after 1 month. Because Window period takes 23 weeks, others remain negative for so long while otherschange.(Trainedcounselor,Lira) Some untrained counselors from Lira however said that they would respond by telling the clients that it couldhavehappenedbecauseofthenatureoftheirredbloodcells.Theyexplainedthatapersonwhose red blood cells have receptor cells can easily acquire HIV well as those with cells which do not have receptorcellscantgetinfectedwithHIV. An untrained counselor from Lira explained that HIV discordance can happen due to immunity. He said that if someone has low immunity then they can easily acquire HIV well as those with high immunity do noteasilyacquireHIV. It depends on your blood and immunity, if you have low immunity, you get HIV quickly and if youhavehighimmunityyougetHIVslowlyduetothewindowperiod.

3.3.3ExperiencesWhileCounselingDiscordantCouples
CounselorsmentionedmanyexperiencesduringthetimetheyhavecounseledHIVdiscordantcouples. Duringtheinterviews,counselorsprovidedbothnegativeandpositiveexperienceswhicharepresented inthesectionsthatfollow. Positiveexperiences On a positive note counselors mentioned that they have seen some discordant couples decide to stay togetherandparticipateinposttestactivities;someHIVnegativemenindiscordantrelationshipsbeing supportive of their HIV positive wives, HIV negative women are very supportive of their HIV positive partners. CouplesDecisiontostayTogether Counselors said that they excited and happy when they see that HIV discordant couples stay together after they receive counseling from them as they do not normally expect many of the couples to stay togetherforalongtime.Themenaretheleastlikelytostayindiscordantrelationships. I never expected discordant couples to stay together but they always ask how best they can be helped to live in that situation, and they have shown willingness to continue in discordant relationshipsandsomehavestayedtogether.(TrainedCounselor,Kampala) 16

PartnersSupportforEachOther Counselors noted that usually the woman who is HIV negative in a discordant relationship is more likely to be supportive to her HIV positive partner than the male partner. They however mentioned that in rare instances, HIV negative men support their HIV positive partners. This they said was a good indicationthatmenalsoacknowledgedthatfactthatsurvivalofapeopleinadiscordantrelationshipisa responsibilityforthemboth. I have seen some HIV negative men supporting their HIV positive wives in this situation. This is reallygoodasIdidnotexpectthatofmeninsuchasituation,butmoreHIVnegativewomenare supportive in discordant relationships. Most HIV negative men in such relationships are usually not supportive of their wives, some end up deserting their wives. (Untrained counselor, Kampala) When most men are HIV negative they tend to be very rough on their HIV positive women, and theydecidetoleavethemforotherwomen.(Untrainedcounselor,Lira) SeekingforMedication HIV discordant couples seeking counseling services and medication together was mentioned as something that brought smiles to counselors faces. This they said was a good experience because it showsthattheircounselingworked. There was also a couple that came for testing and the woman was negative. They are still staying together and it is the woman who comes for the drugs. It is an amazing story (Untrainedcounselor,Mbale) When you see the person who is HIV positive accessing treatment after the counseling in the companyoftheirpartnersitisagoodthing.(Untrainedcounselor,Mbale) AcceptanceofHIVdiscordantTestResults Counselors also mentioned that it feels good when a couple is given discordant result and they accept themandstaytogether. It is a good thing when people accept and believe their HIV discordant test results. (Trained counselor,Lira) Negativeexperiences Wells there were a couple of positive experience mentioned by the counselors, on the other hand they reported that they had experiences which were negative in nature. Among those negative experiences mentioned include: some partners not being supportive of their HIV positive partners, non acceptance of HIV test results, others resort to blame games and some clients especially those who are educated takelongtounderstandtheresults. Lackofsupportfrompartners:CounselorssaidthatsomeHIVnegativemeninadiscordantrelationship arenotsupportiveoftheirHIVpositivewivesastheyattimesdesertorneglectthem.Theysaidthatthis was in contrast with HIV negative women who are always supportive and do everything they can to see that their partners remain healthy. They added that counseling such a couple where the man is HIV

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negative is difficult but some men are however forced to stay in the relationship if they already have children UsuallywhenitisamanwhoisHIVnegative,atfirsttheyparticipateincouplecounseling,post test club activities but later get other partners leaving the HIV positive women alone though someareforcedtostaybecausetheyhavebinderslikechildren.(Trainedcounselor,Kampala) Itisdifficulttobringthecoupletogetherifthemanisnegativeandthewomanispositive,butif thewomanisnegativeandthemanispositive.Thenitiseasytobringthemtogether.(Trained counselor,Lira) NonacceptanceofHIVtestresults:Counselorsmentionedthatintheirexperienceofprovidingservices topeople,theyhaveseensomecouplesrefusingtobelieveresultsofthetest. Most couples upon being told that they are discordant; do not believe the results they think that the laboratory technicians have been bribed to say such results and some of them feel like givingupontherelationships.(Untrainedcounselor,Kampala) People deny their HIV test results especially the positive ones, they Do not accept their results; othersalsofeartodisclosetheirresultstotheirpartners.(Trainedcounselor,Lira) BlameGame:ItwasalsomentionedthatupondiscoveringthattheyareHIVdiscordanttheHIVnegative partnersblametheirHIVpositivepartnersforbeingunfaithfulandacquiringHIV. Usually the HIV negative partners blame their HIV positive partners for being unfaithful and acquiringHIV.(Trainedcounselor,Kampala) There was also a couple with the man who was positive. When he fell sick, he accused the wife of infecting him because of the womans status as a former widow; a couples session was organized with difficulty. It was revealed to him that the woman was negative but he never believed it. The man stormed out and he has never come back to the clinic (Untrained counselor,Mbale) TimetocomprehendHIVtestresults:Itwasalsohighlightedthateducateddiscordantcouplestakelong to understand and comprehend their results compared to the uneducated ones because they always havemanyquestionstoaskandthinkthecounselorsarenotinformed. Mostlytheeducatedpeople,theytakelongtounderstandtheirresultsyettheuneducatedones understand quickly and accept their results and follow instructions they ask many questions. (Trainedcounselor,Lira)

3.3.4Challengesfacedduringcounseling
While counseling discordant couples, counselors experience a number of challenges, highlighted below aresomeofthechallengesmentionedbythecounselors. CounselingCouplesAboutCondomUse Thiswasacommonlymentionedchallengebythecounselors.Theysaidthatintroducingcondomuseto discordant couples who have been having unprotected sex for many years was difficult. Further they mentioned that it is even harder to introduce the condom to younger couples who are newly married and they want to have children. They added that clients think that it is not necessary to use condoms 18

and they also think that they are meant for unfaithful people. Further it was noted that male partners accept that they will use the condoms in the presence of the counselor but back home they do not use them. There was a couple who turned out to be discordant, the man was HIV positive whereas the woman negative but the man did not want to use condoms so he would prick it whenever they hadsex.(Trainedcounselor,Kampala) Newly married couples who want children but they are discordant usually find it difficult to use condoms. We make sure that we give them all information on what could happen and tell them about PMTCT and they make their own decision. We cant tell them to have unprotected sex. (Trainedcounselor,Mbale) GivingHIVDiscordantPeopleHope CounselorsalsomentionedthatgivingHIVdiscordantcoupleshopewasabigchallengebecausemostof theHIVpositivepeopleinadiscordantrelationshipthinkthattheyaregoingtodie.Theyaddedthatthis challenge is compounded more when the HIV positive partner is a woman because their HIV negative malepartnersdonotwanttogoforcounselingsessionswhichmakesthemlosehopeintherelationship andlifegenerally. Counseling a discordant couple is not an easy job because usually they want to separate; the positive people want to separate while the other negative people do not want so giving such people hope that they can survive in a discordant relationship is hard. (Untrained counselor, Kampala) ExplainingHIVDiscordance Explaining HIV discordance and how it occurs was by far the biggest challenge cited by all counselors. They stressed that it is hard for them to explain to such a couple about discordance because the explanations are not clear and many usually do not believe the results so counselors usually refer them toothercentersforconfirmation Explainingdiscordanceisalsoachallengetomeascounselor.(TrainedCounselor,Lira) Addressingstigma CounselorsinLirasaidthataddressingHIVstigmaisachallenge.Theysaidthatclientsdonotwantother people even medical personnel to know of their HIV status. They added that some of the clients even fear to identify themselves at the ART clinic. They said that this was bad because it affects the HIV positivepartnerswhomaymissoutontheARVs Addressing stigma is also still a challenge for example , if a client discloses to me, she does not wantanothernurseordoctortoknowthatsheisHIVpositive.Theyevendonotwanttoidentify themselvesattheARTClinic.(Untrainedcounselor,Lira) Onemansenthisyoungerwifetotestaloneandshewasnegativeafterhehadtestedwiththe firstwifewhowaspositivelikehim.Icouldnotdisclosetothis\womanandthemankepton tellingmehowhewantsmorechildrenfromhersincesheistheyoungerwife.Thatwasahard thingformeandallIdidistoadvisethemantocomeandtesttogetherwiththeyoungerwife also(Trainedcounselor,Mbale) 19

MostDifficultQuestionstoAnswer All counselors (trained and not trained) in the three study districts mentioned that explaining discordance and how it happens to a couple is the most challenging issue. They however said that they dependonthechanceexplanationbecausethereisnogenuineexplanationofhowdiscordanceoccurs. Explaining discordance and how it happens is hard for me; I need concrete medical explanation ofhowdiscordanceoccurs.(Untrainedcounselor,Kampala) Explaining how one person remains positive and the other negative is hard for me, since I have limitedknowledgeandIneedtocontinuewithmedicaleducationonHIV.(Untrainedcounselor, Lira) As a person sometimes I also get confused, partners have been having unprotected sex for so many years and then they turnout discordant! This is hard to understand. (Trained counselor, Kampala) Some counselors from Kampala and Mbale further said that the question Can we be able to have children without infecting the uninfected partner? is difficult for them to answer as they are just counselors and not doctors. They however said that they normally refer clients with such a question to themedicalpersonnel The question of how a discordant couple can give birth to an HIV negative baby was also cited among the most challenging questions for many counselors. They said that it was challenging because they do nothaveaclearexplanationofthiscanhappen. HowdoessomeonewhoisHIVpositiveproduceachildwhoisnegative(Untrainedcounselor, Mbale)

3.3.5BeliefsandMisconceptionsaboutHIVDiscordanceamongCouples
DuringthestudycounselorswereaskedboutthecommonmythsandmisconceptionswithregardtoHIV discordance among the clients they serve. Findings from this study indicate that the most common misconception among clients are that the uninfected partner has blood group O, which they believe is strongerandresistanttoHIVinfection.Theyalsoreportedthatclientsbelieveiftheinfectedpartnerhas otherbloodgroups,whichareweakandnotresistanttoHIVtheyarelikelytogetinfectedwithHIV. Othermisconceptions/beliefsthatpeoplehaveaboutHIVdiscordanceare: It is a punishment or curse from God. God is punishing the infected partner and protecting the uninfectedpartnerfromHIV Theuninfectedpartneralsohasthevirusbutitishidingsomewhereinthebody The HIV negative partner took some drugs (panadol or septrin) prior to coming for the HIV test, makingHIVundetectable CircumcisedmencannotgetHIV HIVDiscordanceisaresultofwitchcraft. OnecanonlytransmitHIViftheyhavesexualintercourseandhavenotpreparedtheother partnerwellbeforesexualintercourse. 20

Ifonehasgonorrheas/hecannotgetHIV IfamanwithdrawsanddoesnotejaculateinwomanhecannottransmitHIVtoher.

3.3.6CommunicationMaterialsforCounselors
Overall From all the three study areas most commonly mentioned materials were flip charts, brochures, booklets, testimonials in form of audio and video and documentaries/films. They said that flip charts could be important tools for explaining discordance to clients. Video/audio testimonials were seen as materials which could be used to give discordant couples hope when they hear or see fellow discordant couple give their experiences. Brochures on the other hand were said to be portable as they contain summarized information which does not require a lot of time to read where as with a booklet much moreinformationwithgoodexplanationscanbeincluded. Visual Documentaries/films explaining the mystery surrounding HIV discordance were most preferred materials. Suggestions All Counselors felt that materials alone may not work as they may not exclusively explain all aspects of discordance; they therefore suggested that having refresher courses, sensitizing the masses about the reality of HIV discordance and training more counselors in CHCT could help them understand HIV discordancebetter Materials alone are not enough; counselors need more training about discordance because counseling involves a lot of things which can not be put in a small material like billboard or poster. I think a Training manual is better because it can be used during training sessions of counselors.(Trainedcounselor,Kampala) Othermentionedmaterials/avenuesofcommunicationinclude;billboards,wallcharts,radiotalkshows, andtrainingbooklets/manuals. InformationtobeIncluded Counselorssuggestedthatinformationaboutthefollowingshouldbeincludedinthematerials; The importance of couple counseling and testing because some people still think that their partnersresultsaretheirresults Whatdiscordanceis,howitreallyoccursanditscauses About condom use and people should be informed that condoms are not only for commercial sexworkers Howdiscordantcouplescansurviveintheirsituationandliveanormallife How counselors can effectively advise discordant couples to stay together and support each other. TheavailabilityoffreeCHCTservicesatAIC. Whydiscordanceisshortlivedforsomepeopleandlongerforothers. Theimportanceofdisclosure HowadiscordantcouplecangivebirthtoanHIVnegativebaby AllpossibleresultsofanHIVtest HowtoprotectthenegativepartnerfromgettinginfectedwithHIV ThewindowperiodofHIV 21

4.0Conclusionandrecommendation
4.1Conclusion
FromthestudyfindingsitisclearthatpeoplesknowledgelevelsonHIVdiscordancearestilllow: ThereisnoclearcutdifferencebetweenhowtrainedcounselorsanduntrainedunderstandHIV discordance. WhereasallthepeopleindiscordantrelationshipscouldclearlyandcorrectlydefineHIV discordance,ahandfulofthosewhodonotknowtheirHIVstatuscouldcorrectlydefineHIV discordance. ExplaininghowHIVdiscordanceoccursisstillaproblemtoallrespondents.Counselorsarestill confusedbythisphenomenonandonlydependonthechanceandwindowperiodexplanations whichtheysaidwereinsufficientexplanationstoclients. TherearestillmanybeliefsandmisconceptionsaboutHIVdiscordanceespeciallyamongthe peoplewhohavenotyettestedforHIV. PeoplewhoarenotawareoftheirHIVstatusperceiveHIVdiscordanceasnotbeingcommon whereasthosethatareawareoftheirHIVstatusandareindiscordantrelationshipsseeitasa commonoccurrence. PeoplewhoareunawareabouttheirHIVstatusgetinformationaboutdiscordancefromhearsay andrumorsintheircommunitiesascomparedthosepeoplewhohavetestedwhoareexposed tothemessagesintheclinics. Eventrainedcounselorswerequiteincapableofadvisingpeopleonhowtohandletheirlivesat homeaftertheyhavelefttheclinic.Theyseemtohavethemedicalfactsrightbutfailto effectivelygivepsychosocialsupporttothecouples. Video/audio testimonials were most preferred materials for people in discordant relationships but posters and billboards were commonly mentioned as well. Commonly mentioned among those unaware of their HIV status were charts, posters and brochures. Most preferred among counselors were Visual documentaries/films explaining HIV discordance but in addition flipcharts,brochuresandvideo/audiotestimonialsofdiscordantcouplesweresuggested. Sensitization of masses and refresher training of counselors were suggested as the most effectivewaysofdealingwithissuessurroundingHIVdiscordance.

4.2Recommendations
ThisstudyaimedatassessingcounselorsandclientsknowledgelevelsonHIVdiscordance;determining the type of materials on discordance that would be most useful for counselors and clients; and generating ideas on the content needed in materials on discordance for counselors and clients. Hinged ontheaboveweputforwardthefollowingrecommendations Considerdevelopingthedifferentmaterialssuggestedbythedifferentrespondents Inthesematerialsinformationaboutthefollowingshouldbeincludedandelucidatedindetail 1. HowHIVdiscordanceoccurs(Couldincludethesciencebehinddiscordance)

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2. HowanHIVdiscordantcouplecanhavechildrenandclearstepstheyneedinordertogive birthtoHIVnegativechildren. 3. HowanHIVdiscordantcouplecancontinuehavingsexwithoutinfectingtheuninfected partners 4. OtheravenuesthroughwhichHIVcanbetransmittedfromonepersontoanotherother thanthroughunprotectedsexualintercourse 5. WrongbeliefsandmisconceptionsaboutHIVdiscordanceshouldbedispelled IntheexistingcommunicationstrategyonHIVdiscordance,theroleplayedbychildreninkeepinga discordantcoupletogethershouldbeemphasized Inadditiontomaterialsconsiderorganizingtrainingworkshopsforcounselorsandemphasizing communityoutreachesontheissueofHIVdiscordance.

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Appendix QuestionsaboutHIVDiscordance QuestionsthatpeopleindiscordantrelationshipshaveaboutHIVdiscordance Howcanwesurviveinthisstate? HowcanIlivewiththeHIVvirusandmypartnerisnothaving? CanwebeinpositiontoproduceanHIVnegativechild? HowdoesHIVdiscordanceaffectthosecouplesorpeopleinbloodgroupO? HowcomeIaminfectedandyetmypartnerisnot? Canwebeabletohavechildrenwithoutinfectingtheuninfectedpartner? WhenshallwegetacureforHIV? Whydowehavetouseacondomyetwehavebeenhavingunprotectedsexpreviously? Whatcausesdiscordance? Isitgoodtocontinuewiththisrelationship? Ifaman/womanispositive,ornegative,doesitmeanonepartnerwillsurviveforlong? Forhowlongshallwekeepusingcondomssinceonepersonisnegativeandtheotherpositive? QuestionsthatpeoplewhoarenotawareoftheirHIVstatushaveaboutHIVdiscordance How possible is it for one us to be HIV positive when the other is HIV negative yet we sleep togetherandhaveunprotectedsex? WhatshouldwedotoseethatthepartnerwhoisHIVnegativedoesnoteventuallygetit? Whenwilltheuninfectedpersonbecomeinfected? CantheuninfectedpersonindiscordantrelationshipgetHIVfromArazorblade? QuestionsthatCounselorshaveaboutHIVdiscordance Whatreallycausesdiscordance? Howdoesdiscordancereallyoccur? WhereandwhendoesHIVinfectiontakeplace? IsthereapossibilitythatagivenhumanbeingcanbeimmunetoHIV? 24

Datacollectiontools
Key informant guide for Counselors
Date: ___________________ District___________________________Location: ___________________________ FGD Facilitator: __________________ Note Taker: _____________________ No of Respondents: ______________ INTRODUCTION: Good morning/ afternoon my name is ___________ and my colleague is ___________ we are working with the Health Communication Partnership (HCP). HCP in partnership with the Ministry of Health and AIDS Information Centre (AIC) launched the national Go Together, Know Together couples HIV counseling and testing (CHCT) campaign in 8 districts in September 2009. Between May and June 2010, a support supervision exercise was carried out in these districts to assess campaign successes and challenges. One of the major challenges cited was lack of proper understanding of discordance among health workers and clients. In order to address this gap, HCP plans to develop new materials for providers and clients on discordance. Today we are here to ask you questions about the subject matter so that we can be able to consider your views and input as we develop the new materials. Remember this is just a discussion and not an exam aimed at assessing your knowledge levels. We therefore expect you to share with us your experience in handling discordant couples, challenges faced, your understanding of HIV discordance among others. Instructions: Ask the following questions for Counselors trained in CHCT and those not trained. The Note Taker should be able to record the responses in the note book. Discussion Questions 1. What are your roles and responsibilities in relation to providing counseling services to HIV discordant couples in this facility? 2. In your own words, what do you understand by the term HIV discordance? 3. Think about your facility and the clients you serve, what have been your experiences counseling discordant couples? Probe for positive and negative experiences 4. Based on your experience, what are your biggest challenges you have encountered while counseling discordant couples? 5. Based on your experience, what questions do clients normally ask about discordance? 6. Which questions are most difficult to answer and why?

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7. What are some of the common myths and misconceptions clients have on HIV discordance? 8. How would you respond if a client asked you, How is it possible that we can be having sex for many years, yet one is HIV positive and the other is HIV negative? 9. If we were to design a material to help counselors explain discordance, what type of material would be most useful to you? 10. What information in particular would you like to see included in this material? 11. Do you have any questions about HIV discordance?

End the interview and thank the respondent

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FGD GUIDE FOR DISCORDANT COUPLES Date: ___________________

District___________________________Location: ___________________________

FGD Facilitator: __________________ Note Taker: _____________________ No of Respondents: ______________ INTRODUCTION: Good morning/ afternoon my name is ___________ and my colleague is ___________ we are working with the Health Communication Partnership (HCP). HCP in partnership with the Ministry of Health and AIDS Information Centre (AIC) launched the national Go Together, Know Together couples HIV counseling and testing (CHCT) campaign in 8 districts in September 2009. Between May and June 2010, a support supervision exercise was carried out in these districts to assess campaign successes and challenges. One of the major challenges cited was lack of proper understanding of discordance among health workers and clients. In order to address this gap, HCP plans to develop new materials for providers and clients on discordance. Today we are here to ask you questions about the subject matter so that we can be able to consider your views and input as we develop the new materials. Remember this is just a discussion and not an exam aimed at assessing your knowledge levels. We therefore expect you to share with us your experience in living as a discordant couple, challenges faced, your understanding of HIV discordance among others. Instructions: Ask the following questions for discordant couples. Ensure that all participants are involved throughout the discussion. The Note Taker should be able to record the responses in the note book. Discussion Questions 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. How did you come to know that you were HIV discordant? How did you feel when you first learned that you had different HIV statuses? What questions did you have when you first learned you were HIV discordant? What was it that most helped you understand your discordant results? What are the biggest challenges you face being in a discordant relationship? How do you deal with those challenges? How would you explain what discordance is to one of your friends or family members? How would you explain how discordance occurs to one of your friends or family members? Did you consider separating when you found out you were discordant? Why or why not? Why did you decide to stay together? What steps do you take if any, to prevent infecting your HIV negative partner? What motivates you to protect your HIV negative partner? If we were to design some sort of informational material for discordant couples, what kind of material would be most useful? 14. What information would you like to see covered in this material? 15. What advice would you give to other discordant couples like you? 16. What more do you want to know about discordance?

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FGD GUIDE FOR COUPLES WHO HAVENT TESTED FOR HIV TOGETHER Date: ___________________ District___________________________Location: ___________________________ FGD Facilitator: __________________ Note Taker: _____________________ No of Respondents: ______________ INTRODUCTION: Good morning/ afternoon my name is ___________ and my colleague is ___________ we are working with the Health Communication Partnership (HCP). HCP in partnership with the Ministry of Health and AIDS Information Centre (AIC) launched the national Go Together, Know Together couples HIV counseling and testing (CHCT) campaign in 8 districts in September 2009. Between May and June 2010, a support supervision exercise was carried out in these districts to assess campaign successes and challenges. One of the major challenges cited was lack of proper understanding of discordance among health workers and clients. In order to address this gap, HCP plans to develop new materials for providers and clients on discordance. Today we are here to ask you questions about the subject matter so that we can be able to consider your views and input as we develop the new materials. Remember this is just a discussion and not an exam aimed at assessing your knowledge levels. We therefore expect you to share with us what you know about HIV discordance. Instructions: Ask the following questions for couples who have not tested for HIV together. Ensure that all participants are involved throughout the discussion. The Note Taker should be able to record the responses in the note book. Discussion Questions: 1. Have you ever heard or seen any messages on HIV discordance before? What did you see or hear? 2. What do you understand by the term HIV discordance? Note to the Facilitator: Before moving on, explain to participants that HIV discordance is a situation in which a couple in a sexual relationship test for HIV and the results show that one is positive whereas the other is negative. 3. Do you think it is possible for a couple to be having unprotected sex for many years and still have different HIV statuses? Why or why not? 4. How do you think it happens that one partner is HIV positive and the other is HIV negative even after having unprotected sex together for many years? 5. How common do you think discordance is in Uganda? 6. What questions do you have about discordance? 7. If we were to design an informational material for couples about discordance, what type of material would be most useful? 8. What information would you like to see covered in this material?

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