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Published in: BMC Infectious Diseases 1/2016

Open Access 01-12-2016 | Research article

‘People say that we are already dead much as we can still walk’: a qualitative investigation of community and couples’ understanding of HIV serodiscordance in rural Uganda

Authors: Jiho Kim, Mastula Nanfuka, David Moore, Murisho Shafic, Maureen Nyonyitono, Josephine Birungi, Florence Galenda, Rachel King

Published in: BMC Infectious Diseases | Issue 1/2016

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Abstract

Background

Stable, co-habiting HIV serodiscordant couples are a key population in terms of heterosexual transmission in sub-Saharan Africa. Despite the wide availability of antiretroviral treatment and HIV educational programs, heterosexual transmission continues to drive the HIV epidemic in Africa. To investigate some of the factors involved in transmission or maintenance of serodiscordant status, we designed a study to examine participants’ understanding of HIV serodiscordance and the implications this posed for their HIV prevention practices.

Methods

In-depth interviews were conducted with 28 serodiscordant couples enrolled in a treatment-as-prevention study in Jinja, Uganda. Participants were asked questions regarding sexual behaviour, beliefs in treatment and prevention, participants’ and communities’ understanding and context around HIV serodiscordance. Qualitative framework analysis capturing several main themes was carried out by a team of four members, and was cross-checked for consistency.

Results

It was found that most couples had difficulty explaining the phenomenon of serodiscordance and tended to be confused regarding prevention. Many individuals still held beliefs in pseudoscientific explanations for HIV susceptibility such as blood type and blood “strength”. The participants’ trust of treatment and medical services were well established. However, the communities’ views of both serodiscordance and treatment were more pessimistic and wrought with mistrust. Stigmatization of serodiscordance and HIV-positive status were reported frequently.

Conclusions

The results indicate that despite years of treatment and prevention methods being available, stigmatization and mistrust persist in the communities of HIV-affected individuals and may directly contribute to new cases and seroconversion. We suggest that to optimize the effects of HIV treatment and prevention, clear education and support of such methods are sorely needed in sub-Saharan African communities.
Literature
2.
go back to reference Dunkle KL, Stephenson R, Karita E, Chomba E, Kayitenkore K, Vwalika C, Greenberg L, Allen S. New heterosexually transmitted HIV infections in married or cohabiting couples in urban Zambia and Rwanda: an analysis of survey and clinical data. Lancet. 2008;371(9631):2183–91.CrossRefPubMed Dunkle KL, Stephenson R, Karita E, Chomba E, Kayitenkore K, Vwalika C, Greenberg L, Allen S. New heterosexually transmitted HIV infections in married or cohabiting couples in urban Zambia and Rwanda: an analysis of survey and clinical data. Lancet. 2008;371(9631):2183–91.CrossRefPubMed
3.
go back to reference Carpenter LM, Kamali A, Ruberantwari A, Malamba SS, Whitworth JA. Rates of HIV-1 transmission within marriage in rural Uganda in relation to the HIV sero-status of the partners. Aids. 1999;13(9):1083–9.CrossRefPubMed Carpenter LM, Kamali A, Ruberantwari A, Malamba SS, Whitworth JA. Rates of HIV-1 transmission within marriage in rural Uganda in relation to the HIV sero-status of the partners. Aids. 1999;13(9):1083–9.CrossRefPubMed
4.
go back to reference Eyawo O, de Walque D, Ford N, Gakii G, Lester RT, Mills EJ. HIV status in discordant couples in sub-Saharan Africa: a systematic review and meta-analysis. Lancet Infect Dis. 2010;10(11):770–7.CrossRefPubMed Eyawo O, de Walque D, Ford N, Gakii G, Lester RT, Mills EJ. HIV status in discordant couples in sub-Saharan Africa: a systematic review and meta-analysis. Lancet Infect Dis. 2010;10(11):770–7.CrossRefPubMed
5.
go back to reference Hira SK, Feldblum PJ, Kamanga J, Mukelabai G, Weir SS, Weir J. Condom and nonoxynol-9 use and the incidence of HIV infection in serodiscordant couples in Zambia. Int J STD AIDS. 1997;8(4):243–50.CrossRefPubMed Hira SK, Feldblum PJ, Kamanga J, Mukelabai G, Weir SS, Weir J. Condom and nonoxynol-9 use and the incidence of HIV infection in serodiscordant couples in Zambia. Int J STD AIDS. 1997;8(4):243–50.CrossRefPubMed
6.
go back to reference Lurie MN, Williams BG, Zuma K, Mkaya-Mwamburi D, Garnett GP, Sweat MD, Gittelsohn J, Karim SS. Who infects whom? HIV-1 concordance and discordance among migrant and non-migrant couples in South Africa. Aids. 2003;17(15):2245–52.CrossRefPubMed Lurie MN, Williams BG, Zuma K, Mkaya-Mwamburi D, Garnett GP, Sweat MD, Gittelsohn J, Karim SS. Who infects whom? HIV-1 concordance and discordance among migrant and non-migrant couples in South Africa. Aids. 2003;17(15):2245–52.CrossRefPubMed
7.
go back to reference Ahmed S, Lutalo T, Wawer M, Serwadda D, Sewankambo NK, Nalugoda F, Makumbi F, Wabwire-Mangen F, Kiwanuka N, Kigozi G. HIV incidence and sexually transmitted disease prevalence associated with condom use: a population study in Rakai, Uganda. Aids. 2001;15(16):2171–9.CrossRefPubMed Ahmed S, Lutalo T, Wawer M, Serwadda D, Sewankambo NK, Nalugoda F, Makumbi F, Wabwire-Mangen F, Kiwanuka N, Kigozi G. HIV incidence and sexually transmitted disease prevalence associated with condom use: a population study in Rakai, Uganda. Aids. 2001;15(16):2171–9.CrossRefPubMed
8.
go back to reference Mensch BS, van der Straten A, Katzen LL. Acceptability in microbicide and PrEP trials: current status and a reconceptualization. Curr Opin HIV AIDS. 2012;7(6):534.CrossRefPubMedPubMedCentral Mensch BS, van der Straten A, Katzen LL. Acceptability in microbicide and PrEP trials: current status and a reconceptualization. Curr Opin HIV AIDS. 2012;7(6):534.CrossRefPubMedPubMedCentral
9.
10.
go back to reference Anglemyer A, Horvath T, Rutherford G. Antiretroviral therapy for prevention of HIV transmission in HIV-discordant couples. JAMA. 2013;310(15):1619–20.CrossRefPubMed Anglemyer A, Horvath T, Rutherford G. Antiretroviral therapy for prevention of HIV transmission in HIV-discordant couples. JAMA. 2013;310(15):1619–20.CrossRefPubMed
11.
go back to reference Baeten JM, Donnell D, Ndase P, Mugo NR, Campbell JD, Wangisi J, Tappero JW, Bukusi EA, Cohen CR, Katabira E. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. New England J Med. 2012;367(5):399–410.CrossRef Baeten JM, Donnell D, Ndase P, Mugo NR, Campbell JD, Wangisi J, Tappero JW, Bukusi EA, Cohen CR, Katabira E. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. New England J Med. 2012;367(5):399–410.CrossRef
12.
go back to reference Donnell D, Baeten JM, Kiarie J, Thomas KK, Stevens W, Cohen CR, McIntyre J, Lingappa JR, Celum C, Team PiPHHTS. Heterosexual HIV-1 transmission after initiation of antiretroviral therapy: a prospective cohort analysis. Lancet. 2010;375(9731):2092–8.CrossRefPubMedPubMedCentral Donnell D, Baeten JM, Kiarie J, Thomas KK, Stevens W, Cohen CR, McIntyre J, Lingappa JR, Celum C, Team PiPHHTS. Heterosexual HIV-1 transmission after initiation of antiretroviral therapy: a prospective cohort analysis. Lancet. 2010;375(9731):2092–8.CrossRefPubMedPubMedCentral
13.
go back to reference Desgrées-du-Loû A, Orne-Gliemann J. Couple-centred testing and counselling for HIV serodiscordant heterosexual couples in sub-Saharan Africa. Reprod Health Matters. 2008;16(32):151–61.CrossRefPubMed Desgrées-du-Loû A, Orne-Gliemann J. Couple-centred testing and counselling for HIV serodiscordant heterosexual couples in sub-Saharan Africa. Reprod Health Matters. 2008;16(32):151–61.CrossRefPubMed
14.
go back to reference Painter TM. Voluntary counseling and testing for couples: a high-leverage intervention for HIV/AIDS prevention in sub-Saharan Africa. Soc Sci Med. 2001;53(11):1397–411.CrossRefPubMed Painter TM. Voluntary counseling and testing for couples: a high-leverage intervention for HIV/AIDS prevention in sub-Saharan Africa. Soc Sci Med. 2001;53(11):1397–411.CrossRefPubMed
15.
go back to reference Merson MH, Dayton JM, O'Reilly K. Effectiveness of HIV prevention interventions in developing countries. AIDS (London, England). 2000;14:S68–84.CrossRef Merson MH, Dayton JM, O'Reilly K. Effectiveness of HIV prevention interventions in developing countries. AIDS (London, England). 2000;14:S68–84.CrossRef
16.
go back to reference Creese A, Floyd K, Alban A, Guinness L. Cost-effectiveness of HIV/AIDS interventions in Africa: a systematic review of the evidence. Lancet. 2002;359(9318):1635–42.CrossRefPubMed Creese A, Floyd K, Alban A, Guinness L. Cost-effectiveness of HIV/AIDS interventions in Africa: a systematic review of the evidence. Lancet. 2002;359(9318):1635–42.CrossRefPubMed
17.
go back to reference Cohen MS, Chen YQ, McCauley M, Gamble T, Hosseinipour MC, Kumarasamy N, Hakim JG, Kumwenda J, Grinsztejn B, Pilotto JH, et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365(6):493–505.CrossRefPubMedPubMedCentral Cohen MS, Chen YQ, McCauley M, Gamble T, Hosseinipour MC, Kumarasamy N, Hakim JG, Kumwenda J, Grinsztejn B, Pilotto JH, et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365(6):493–505.CrossRefPubMedPubMedCentral
18.
go back to reference Bunnell R, Ekwaru JP, Solberg P, Wamai N, Bikaako-Kajura W, Were W, Coutinho A, Liechty C, Madraa E, Rutherford G. Changes in sexual behavior and risk of HIV transmission after antiretroviral therapy and prevention interventions in rural Uganda. Aids. 2006;20(1):85–92.CrossRefPubMed Bunnell R, Ekwaru JP, Solberg P, Wamai N, Bikaako-Kajura W, Were W, Coutinho A, Liechty C, Madraa E, Rutherford G. Changes in sexual behavior and risk of HIV transmission after antiretroviral therapy and prevention interventions in rural Uganda. Aids. 2006;20(1):85–92.CrossRefPubMed
19.
go back to reference Wamoyi J, Mbonye M, Seeley J, Birungi J, Jaffar S. Changes in sexual desires and behaviours of people living with HIV after initiation of ART: Implications for HIV prevention and health promotion. BMC Public Health. 2011;11(1):633.CrossRefPubMedPubMedCentral Wamoyi J, Mbonye M, Seeley J, Birungi J, Jaffar S. Changes in sexual desires and behaviours of people living with HIV after initiation of ART: Implications for HIV prevention and health promotion. BMC Public Health. 2011;11(1):633.CrossRefPubMedPubMedCentral
20.
go back to reference Kilembe W, Wall KM, Mokgoro M, Mwaanga A, Dissen E, Kamusoko M, Phiri H, Sakulanda J, Davitte J, Reddy T. Knowledge of HIV Serodiscordance, Transmission, and Prevention among Couples in Durban, South Africa. 2015. Kilembe W, Wall KM, Mokgoro M, Mwaanga A, Dissen E, Kamusoko M, Phiri H, Sakulanda J, Davitte J, Reddy T. Knowledge of HIV Serodiscordance, Transmission, and Prevention among Couples in Durban, South Africa. 2015.
21.
go back to reference Dlamini PS, Wantland D, Makoae LN, Chirwa M, Kohi TW, Greeff M, Naidoo J, Mullan J, Uys LR, Holzemer WL. HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDS. 2009;23(5):377–87.CrossRefPubMedPubMedCentral Dlamini PS, Wantland D, Makoae LN, Chirwa M, Kohi TW, Greeff M, Naidoo J, Mullan J, Uys LR, Holzemer WL. HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDS. 2009;23(5):377–87.CrossRefPubMedPubMedCentral
22.
go back to reference Reda AA, Biadgilign S. Determinants of adherence to antiretroviral therapy among HIV-infected patients in Africa. AIDS Res Treatment. 2012;2012:1–8.CrossRef Reda AA, Biadgilign S. Determinants of adherence to antiretroviral therapy among HIV-infected patients in Africa. AIDS Res Treatment. 2012;2012:1–8.CrossRef
23.
go back to reference King R, Wamai N, Khana K, Johansson E, Lindkvist P, Bunnell R. “Maybe his blood is still strong”: a qualitative study among HIV-sero-discordant couples on ART in rural Uganda. BMC Public Health. 2012;12(1):801.CrossRefPubMedPubMedCentral King R, Wamai N, Khana K, Johansson E, Lindkvist P, Bunnell R. “Maybe his blood is still strong”: a qualitative study among HIV-sero-discordant couples on ART in rural Uganda. BMC Public Health. 2012;12(1):801.CrossRefPubMedPubMedCentral
24.
go back to reference Kalichman SC, Simbayi L. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care. 2004;16(5):572–80.CrossRefPubMed Kalichman SC, Simbayi L. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care. 2004;16(5):572–80.CrossRefPubMed
25.
go back to reference Bogart LM, Skinner D, Weinhardt LS, Glasman L, Sitzler C, Toefy Y, Kalichman SC. HIV/AIDS misconceptions may be associated with condom use among black South Africans: an exploratory analysis. Afr J AIDS Res. 2011;10(2):181–7.CrossRefPubMedPubMedCentral Bogart LM, Skinner D, Weinhardt LS, Glasman L, Sitzler C, Toefy Y, Kalichman SC. HIV/AIDS misconceptions may be associated with condom use among black South Africans: an exploratory analysis. Afr J AIDS Res. 2011;10(2):181–7.CrossRefPubMedPubMedCentral
26.
go back to reference WHO: Guidance on couples HIV testing and counselling, including antiretroviral therapy for treatment and prevention in serodiscordant couples: Recommendations for a public health approach. In: Geneva: WHO, UNAIDS; 2013. WHO: Guidance on couples HIV testing and counselling, including antiretroviral therapy for treatment and prevention in serodiscordant couples: Recommendations for a public health approach. In: Geneva: WHO, UNAIDS; 2013.
27.
go back to reference Birungi J, Min JE, Muldoon KA, Kaleebu P, King R, Khanakwa S, Nyonyintono M, Chen Y, Mills EJ, Lyagoba F. Lack of Effectiveness of Antiretroviral Therapy in Preventing HIV Infection in Serodiscordant Couples in Uganda: An Observational Study. PLoS One. 2015;10(7):e0132182.CrossRefPubMedPubMedCentral Birungi J, Min JE, Muldoon KA, Kaleebu P, King R, Khanakwa S, Nyonyintono M, Chen Y, Mills EJ, Lyagoba F. Lack of Effectiveness of Antiretroviral Therapy in Preventing HIV Infection in Serodiscordant Couples in Uganda: An Observational Study. PLoS One. 2015;10(7):e0132182.CrossRefPubMedPubMedCentral
28.
go back to reference Lacey A, Luff D. Qualitative data analysis: Trent Focus Sheffield. 2001. Lacey A, Luff D. Qualitative data analysis: Trent Focus Sheffield. 2001.
29.
go back to reference Ngure K, Mugo N, Celum C, Baeten JM, Morris M, Olungah O, Olenja J, Tamooh H, Shell-Duncan B. A qualitative study of barriers to consistent condom use among HIV-1 serodiscordant couples in Kenya. AIDS Care. 2012;24(4):509–16.PubMed Ngure K, Mugo N, Celum C, Baeten JM, Morris M, Olungah O, Olenja J, Tamooh H, Shell-Duncan B. A qualitative study of barriers to consistent condom use among HIV-1 serodiscordant couples in Kenya. AIDS Care. 2012;24(4):509–16.PubMed
30.
go back to reference Tsuma FC, Wekesa AS. Challenges Facing HIV Discordant Couples in Kenya. International J Bus Soc Sci. 2014;5(10):129–139. Tsuma FC, Wekesa AS. Challenges Facing HIV Discordant Couples in Kenya. International J Bus Soc Sci. 2014;5(10):129–139.
31.
go back to reference Prual A, Chacko S, Koch-Weser D. Sexual behaviour, AIDS and poverty in Sub-Saharan Africa. Int J STD AIDS. 1991;2(1):1–9.CrossRefPubMed Prual A, Chacko S, Koch-Weser D. Sexual behaviour, AIDS and poverty in Sub-Saharan Africa. Int J STD AIDS. 1991;2(1):1–9.CrossRefPubMed
32.
go back to reference Lagarde E, Enel C, Pison G. Reliability of reports of sexual behavior: a study of married couples in rural West Africa. Am J Epidemiol. 1995;141(12):1194–200.CrossRefPubMed Lagarde E, Enel C, Pison G. Reliability of reports of sexual behavior: a study of married couples in rural West Africa. Am J Epidemiol. 1995;141(12):1194–200.CrossRefPubMed
33.
go back to reference Allen S, Meinzen-Derr J, Kautzman M, Zulu I, Trask S, Fideli U, Musonda R, Kasolo F, Gao F, Haworth A. Sexual behavior of HIV discordant couples after HIV counseling and testing. Aids. 2003;17(5):733–40.CrossRefPubMed Allen S, Meinzen-Derr J, Kautzman M, Zulu I, Trask S, Fideli U, Musonda R, Kasolo F, Gao F, Haworth A. Sexual behavior of HIV discordant couples after HIV counseling and testing. Aids. 2003;17(5):733–40.CrossRefPubMed
34.
go back to reference Kalichman SC, Simbayi LC. HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa. Sex Transm Infect. 2003;79(6):442–7.CrossRefPubMedPubMedCentral Kalichman SC, Simbayi LC. HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa. Sex Transm Infect. 2003;79(6):442–7.CrossRefPubMedPubMedCentral
35.
go back to reference Campbell C, Foulis CA, Maimane S, Sibiya Z. "I have an evil child at my house": stigma and HIV/AIDS management in a South African community. Am J Public Health. 2005;95(5):808–15.CrossRefPubMedPubMedCentral Campbell C, Foulis CA, Maimane S, Sibiya Z. "I have an evil child at my house": stigma and HIV/AIDS management in a South African community. Am J Public Health. 2005;95(5):808–15.CrossRefPubMedPubMedCentral
Metadata
Title
‘People say that we are already dead much as we can still walk’: a qualitative investigation of community and couples’ understanding of HIV serodiscordance in rural Uganda
Authors
Jiho Kim
Mastula Nanfuka
David Moore
Murisho Shafic
Maureen Nyonyitono
Josephine Birungi
Florence Galenda
Rachel King
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Infectious Diseases / Issue 1/2016
Electronic ISSN: 1471-2334
DOI
https://doi.org/10.1186/s12879-016-1998-9

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