"How am I going to live?": exploring barriers to ART adherence among adolescents and young adults living with HIV in Uganda

Sarah MacCarthy, Uzaib Saya, Clare Samba, Josephine Birungi, Stephen Okoboi, Sebastian Linnemayr, Sarah MacCarthy, Uzaib Saya, Clare Samba, Josephine Birungi, Stephen Okoboi, Sebastian Linnemayr

Abstract

Background: Studies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with HIV. We qualitatively explored barriers to ART adherence in Uganda among individuals age 14-24 to understand the unique challenges faced by this age group.

Methods: We conducted focus group (FG) discussions with Community Advisory Board members (n = 1), health care providers (n = 2), and male and female groups of adolescents age 14-17 (n = 2) and youth age 18-24 (n = 2) in Kampala, Uganda. FGs were transcribed verbatim and translated from Luganda into English. Two investigators independently reviewed all transcripts, developed a detailed codebook, achieved a pooled Cohen's Kappa of 0.79 and 0.80, and used a directed content analysis to identify key themes.

Results: Four barriers to ART adherence emerged: 1) poverty limited adolescents' ability to buy food and undercut efforts to become economically independent in their transition from adolescence to adulthood; 2) school attendance limited their privacy, further disrupting ART adherence; 3) family support was unreliable, and youth often struggled with a constant change in guardianship because they had lost their biological parents to HIV. In contrast peer influence, especially among HIV-positive youth, was strong and created an important network to support ART adherence; 4) the burden of taking multiple medications daily frustrated youth, often leading to so-called 'drug holidays.' Adolescent and youth-specific issues around disclosure emerged across three of the four barriers.

Conclusions: To be effective, programs and policies to improve ART adherence among youth in Uganda must address the special challenges that adolescents and young adults confront in achieving optimal adherence. For example, training on budgeting and savings practices could help promote their transition to financial independence. School staff could develop strategies to help students take their medications consistently and confidentially. While challenging to extend the range of services provided by HIV clinics, successful efforts will require engaging the family, peers, and larger community of health and educational providers to support adolescents and young adults living with HIV to live longer and healthier lives.

Trial registration: ClinicalTrials.gov Identifier: NCT02514356 . Registered August 3, 2015.

Keywords: ART adherence; Adolescents/youth; HIV infections/prevention & control/transmission; HIV/AIDS; Uganda; Young adult.

Conflict of interest statement

Ethics approval and consent to participate

Participants interested in taking part provided verbal consent. Written parental/guardian consent was gained for the participation of those under 16. Ethics approval for this study was provided by RAND’s Human Subjects Protection Committee (HSPC) (Reference IRB00000051) on 8/7/2014 and by the TASO Research Ethics Committee (REC), reference number TASOREC/07/15-UG-REC-009. Further the study was approved by the Uganda National Council for Science and Technology.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. UNAIDS. Global AIDS Monitoring 2018: Indicators for monitoring the 2016 United Nations Political Declaration on Ending AIDS 2017 [Available from: .
    1. The Alan Guttmacher Institute. Adolescent in Uganda: sexual and reproductive health in research in brief. New York The Alan Guttmacher Institute. 2005:1–4.
    1. Mutabazi-Mwesigire D, Seeley J, Martin F, Katamba A. Perceptions of quality of life among Ugandan patients living with HIV: a qualitative study. BMC Public Health. 2014;14(1):343. doi: 10.1186/1471-2458-14-343.
    1. UNAIDS. Report on the global AIDS epidemic: UNAIDS 2012 [Available from: .
    1. Weidle PJ, Malamba S, Mwebaze R, Sozi C, Rukundo G, Downing R, et al. Assessment of a pilot antiretroviral drug therapy programme in Uganda: patients’ response, survival, and drug resistance. Lancet. 2002;360(9326):34–40. doi: 10.1016/S0140-6736(02)09330-3.
    1. Kebba A, Atwine D, Mwebaze R, Kityo C, Nakityo R, Peter M. Therapeutic responses to AZT + 3TC + EFV in advanced antiretroviral naive HIV type 1-infected Ugandan patients. AIDS Res Hum Retrovir. 2002;18(16):1181–1187. doi: 10.1089/08892220260387922.
    1. Mermin J, Lule J, Ekwaru JP, Malamba S, Downing R, Ransom R, et al. Effect of co-trimoxazole prophylaxis on morbidity, mortality, CD4-cell count, and viral load in HIV infection in rural Uganda. Lancet. 2004;364(9443):1428–1434. doi: 10.1016/S0140-6736(04)17225-5.
    1. Mermin J, Were W, Ekwaru JP, Moore D, Downing R, Behumbiize P, et al. Mortality in HIV-infected Ugandan adults receiving antiretroviral treatment and survival of their HIV-uninfected children: a prospective cohort study. Lancet. 2008;371(9614):752–759. doi: 10.1016/S0140-6736(08)60345-1.
    1. Bangsberg DR, Ware N, Simoni JM. Adherence without access to antiretroviral therapy in sub-Saharan Africa? AIDS. 2006;20(1):140–141. doi: 10.1097/01.aids.0000196168.50303.31.
    1. Nachega JB, Mills EJ, Schechter M. Antiretroviral therapy adherence and retention in care in middle-income and low-income countries: current status of knowledge and research priorities. Curr Opin HIV AIDS. 2010;5(1):70–77. doi: 10.1097/COH.0b013e328333ad61.
    1. Shuter J. Forgiveness of non-adherence to HIV-1 antiretroviral therapy. J Antimicrob Chemother. 2008;61(4):769–773. doi: 10.1093/jac/dkn020.
    1. Garcia de Olalla P, Knobel H, Carmona A, Guelar A, Lopez-Colomes JL, Cayla JA. Impact of adherence and highly active antiretroviral therapy on survival in HIV-infected patients. J Acquir Immune Defic Syndr. 2002;30(1):105–110. doi: 10.1097/00042560-200205010-00014.
    1. Abaasa AM, Todd J, Ekoru K, Kalyango JN, Levin J, Odeke E, et al. Good adherence to HAART and improved survival in a community HIV/AIDS treatment and care programme: the experience of the AIDS support organization (TASO), Kampala, Uganda. BMC Health Serv Res. 2008;8:241. doi: 10.1186/1472-6963-8-241.
    1. Hawkins C, Murphy R. Adherence to antiretroviral therapy in resource-limited settings: everything matters. AIDS. 2007;21(8):1041–1042. doi: 10.1097/QAD.0b013e3281900eb9.
    1. Hudelson C, Cluver L. Factors associated with adherence to antiretroviral therapy among adolescents living with HIV/AIDS in low- and middle-income countries: a systematic review. AIDS Care. 2015;27(7):805–816. doi: 10.1080/09540121.2015.1011073.
    1. Adejumo OA, Malee KM, Ryscavage P, Hunter SJ, Taiwo BO. Contemporary issues on the epidemiology and antiretroviral adherence of HIV-infected adolescents in sub-Saharan Africa: a narrative review. J Int AIDS Soc. 2015;18:20049. doi: 10.7448/IAS.18.1.20049.
    1. Ammon N, Mason S, Corkery J. Factors impacting antiretroviral therapy adherence among human immunodeficiency virus–positive adolescents in sub-Saharan Africa: a systematic review. Public Health. 2018;157:20–31. doi: 10.1016/j.puhe.2017.12.010.
    1. Bikaako-Kajura W, Luyirika E, Purcell DW, Downing J, Kaharuza F, Mermin J, et al. Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda. AIDS Behav. 2006;10:S85–S93. doi: 10.1007/s10461-006-9141-3.
    1. Nabukeera-Barungi N, Elyanu P, Asire B, Katureebe C, Lukabwe I, Namusoke E, et al. Adherence to antiretroviral therapy and retention in care for adolescents living with HIV from 10 districts in Uganda. BMC Infect Dis. 2015;15:520. doi: 10.1186/s12879-015-1265-5.
    1. Inzaule SC, Hamers RL, Kityo C, Rinke de Wit TF, Roura M. Long-term antiretroviral treatment adherence in HIV-infected adolescents and adults in Uganda: a qualitative study. PLoS One. 2016;11(11):e0167492. doi: 10.1371/journal.pone.0167492.
    1. Linnemayr S, Huang H, Luoto J, Kambugu A, Thirumurthy H, Haberer JE, et al. Text messaging for improving antiretroviral therapy adherence: no effects after 1 year in a randomized controlled trial among adolescents and young adults. Am J Public Health. 2017;107(12):1944–1950. doi: 10.2105/AJPH.2017.304089.
    1. Nabukeera-Barungi N, Kalyesubula I, Kekitiinwa A, Byakika-Tusiime J, Musoke P. Adherence to antiretroviral therapy in children attending Mulago hospital, Kampala. Ann Trop Paediatr. 2007;27(2):123–131. doi: 10.1179/146532807X192499.
    1. Kim MH, Mazenga AC, Yu X, Ahmed S, Paul ME, Kazembe PN, et al. High self-reported non-adherence to antiretroviral therapy amongst adolescents living with HIV in Malawi: barriers and associated factors. J Int AIDS Soc. 2017;20(1):21437. doi: 10.7448/IAS.20.1.21437.
    1. SMS as an Incentive To Adhere (SITA) - An Intervention Communicating Social Norms by SMS to Improve ARV Adherence. .
    1. Jennings L, Mathai M, Linnemayr S, Trujillo A, Mak'anyengo M, Montgomery BEE, et al. Economic context and HIV vulnerability in adolescents and young adults living in urban slums in Kenya: a qualitative analysis based on scarcity theory. AIDS Behav. 2017;21(9):2784–2798. doi: 10.1007/s10461-017-1676-y.
    1. Rana Y, Haberer J, Huang H, Kambugu A, Mukasa B, Thirumurthy H, et al. Short message service (SMS)-based intervention to improve treatment adherence among HIV-positive youth in Uganda: focus group findings. PLoS One. 2015;10(4):e0125187. doi: 10.1371/journal.pone.0125187.
    1. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. doi: 10.1177/1049732305276687.
    1. Dedoose Version 7.0.23, web application for managing, analyzing, and presenting qualitative and mixed method research data. Los Angeles, CA: SocioCultural research consultants, LLC 2016.
    1. Schenk KD, Kiragu K, Murugi J, Sarna A. If you build it, will they come? A qualitative investigation into community barriers to accessing paediatric HIV services in Kenya. Child Youth Serv Rev. 2014;45:18–27. doi: 10.1016/j.childyouth.2014.03.034.
    1. Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF, Gerrits T, et al. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care. 2007;19(5):658–665. doi: 10.1080/09540120701244943.
    1. Gusdal AK, Obua C, Andualem T, Wahlstrom R, Tomson G, Peterson S, et al. Voices on adherence to ART in Ethiopia and Uganda: a matter of choice or simply not an option? AIDS Care. 2009;21(11):1381–1387. doi: 10.1080/09540120902883119.
    1. Williams S, Renju J, Ghilardi L, Wringe A. Scaling a waterfall: a meta-ethnography of adolescent progression through the stages of HIV care in sub-Saharan Africa. J Int AIDS Soc. 2017;20(1):21922. doi: 10.7448/IAS.20.1.21922.
    1. Singer AW, Weiser SD, McCoy SI. Does food insecurity undermine adherence to antiretroviral therapy? A systematic review. AIDS Behav. 2015;19(8):1510–1526. doi: 10.1007/s10461-014-0873-1.
    1. Anema A, Vogenthaler N, Frongillo EA, Kadiyala S, Weiser SD. Food insecurity and HIV/AIDS: current knowledge, gaps, and research priorities. Curr HIV/AIDS Rep. 2009;6(4):224–231. doi: 10.1007/s11904-009-0030-z.
    1. Frega R, Duffy F, Rawat R, Grede N. Food insecurity in the context of HIV/AIDS: a framework for a new era of programming. Food Nutr Bull. 2010;31(4 Suppl 4):S292–S312. doi: 10.1177/15648265100314S402.
    1. Weiser SD, Palar K, Frongillo EA, Tsai AC, Kumbakumba E, Depee S, et al. Longitudinal assessment of associations between food insecurity, antiretroviral adherence and HIV treatment outcomes in rural Uganda. AIDS. 2014;28(1):115–120. doi: 10.1097/01.aids.0000433238.93986.35.
    1. Dahourou DL, Gautier-Lafaye C, Teasdale CA, Renner L, Yotebieng M, Desmonde S, et al. Transition from paediatric to adult care of adolescents living with HIV in sub-Saharan Africa: challenges, youth-friendly models, and outcomes. J Int AIDS Soc. 2017;20(Suppl 3):21528.
    1. Mark D, Armstrong A, Andrade C, Penazzato M, Hatane L, Taing L, et al. HIV treatment and care services for adolescents: a situational analysis of 218 facilities in 23 sub-Saharan African countries. J Int AIDS Soc. 2017;20(Suppl 3):21591.
    1. Denison JA, Banda H, Dennis AC, Packer C, Nyambe N, Stalter RM, et al. "the sky is the limit": adhering to antiretroviral therapy and HIV self-management from the perspectives of adolescents living with HIV and their adult caregivers. J Int AIDS Soc. 2015;18:19358. doi: 10.7448/IAS.18.1.19358.
    1. Mutumba M, Bauermeister JA, Musiime V, Byaruhanga J, Francis K, Snow RC, et al. Psychosocial challenges and strategies for coping with HIV among adolescents in Uganda: a qualitative study. AIDS Patient Care STDs. 2015;29(2):86–94. doi: 10.1089/apc.2014.0222.
    1. Mellins CA, Brackis-Cott E, Dolezal C, Abrams EJ. The role of psychosocial and family factors in adherence to antiretroviral treatment in human immunodeficiency virus-infected children. Pediatr Infect Dis J. 2004;23(11):1035–1041. doi: 10.1097/.
    1. Mavhu W, Berwick J, Chirawu P, Makamba M, Copas A, Dirawo J, et al. Enhancing psychosocial support for HIV positive adolescents in Harare, Zimbabwe. PLoS One. 2013;8(7):e70254. doi: 10.1371/journal.pone.0070254.
    1. Kamali A, Seeley JA, Nunn AJ, Kengeya-Kayondo JF, Ruberantwari A, Mulder DW. The orphan problem: experience of a sub-Saharan Africa rural population in the AIDS epidemic. AIDS Care. 1996;8(5):509–515. doi: 10.1080/09540129650125470.
    1. Monasch R, Boerma JT. Orphanhood and childcare patterns in sub-Saharan Africa: an analysis of national surveys from 40 countries. AIDS. 2004;18(Suppl 2):S55–S65. doi: 10.1097/00002030-200406002-00007.
    1. Kaggwa EB, Hindin MJ. The psychological effect of orphanhood in a matured HIV epidemic: an analysis of young people in Mukono, Uganda. Soc Sci Med. 2010;70(7):1002–1010. doi: 10.1016/j.socscimed.2009.12.002.
    1. Bronfenbrenner U. Ecology of the family as a context for human development: research perspectives. Dev Psychol. 1986;22(6):723–742. doi: 10.1037/0012-1649.22.6.723.
    1. Wouters E, Masquillier C, Ponnet K, le Roux Booysen F. A peer adherence support intervention to improve the antiretroviral treatment outcomes of HIV patients in South Africa: the moderating role of family dynamics. Soc Sci Med. 2014;113:145–153. doi: 10.1016/j.socscimed.2014.05.020.
    1. Kunutsor S, Walley J, Muchuro S, Katabira E, Balidawa H, Namagala E, et al. Improving adherence to antiretroviral therapy in sub-Saharan African HIV-positive populations: an enhanced adherence package. AIDS Care. 2012;24(10):1308–1315. doi: 10.1080/09540121.2012.661833.
    1. Weiser SD, Hatcher AM, Hufstedler LL, Weke E, Dworkin SL, Bukusi EA, et al. Changes in health and antiretroviral adherence among HIV-infected adults in Kenya: qualitative longitudinal findings from a livelihood intervention. AIDS Behav. 2017;21(2):415–427. doi: 10.1007/s10461-016-1551-2.
    1. Mutwa PR, Van Nuil JI, Asiimwe-Kateera B, Kestelyn E, Vyankandondera J, Pool R, et al. Living situation affects adherence to combination antiretroviral therapy in HIV-infected adolescents in Rwanda: a qualitative study. PLoS One. 2013;8(4):e60073. doi: 10.1371/journal.pone.0060073.
    1. Kampala Dispatch. New high-quality HIV drug to cost UGX 14,000 2017 [Available from: .
    1. Daily Monitor. Uganda seeks to start injectable HIV drugs [Available from: .
    1. DiClemente RJ, Sales JM, Borek N. Barriers to adolescents' participation in HIV biomedical prevention research. J Acquir Immune Defic Syndr. 2010;54(Suppl 1):S12. doi: 10.1097/QAI.0b013e3181e1e2c0.
    1. Mandalazi P, Bandawe C, Umar E. HIV disclosure: parental dilemma in informing HIV infected children about their HIV status in Malawi. Malawi Med J. 2014;26(4):101–104.
    1. Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care STDs. 2010;24(4):247–256. doi: 10.1089/apc.2009.0217.
    1. Cluver LD, Hodes RJ, Toska E, Kidia KK, Orkin FM, Sherr L, et al. 'HIV is like a tsotsi. ARVs are your guns': Associations between HIV-disclosure and adherence to antiretroviral treatment among adolescents in South Africa. AIDS. 2015;29(Suppl 1):S57–S65. doi: 10.1097/QAD.0000000000000695.
    1. Midtbo V, Shirima V, Skovdal M, Daniel M. How disclosure and antiretroviral therapy help HIV-infected adolescents in sub-Saharan Africa cope with stigma. Afr J AIDS Res. 2012;11(3):261–271. doi: 10.2989/16085906.2012.734987.
    1. Nichols J, Steinmetz A, Paintsil E. Impact of HIV-status disclosure on adherence to antiretroviral therapy among HIV-infected children in resource-limited settings: a systematic review. AIDS Behav. 2017;21(1):59–69. doi: 10.1007/s10461-016-1481-z.
    1. Bygrave Helen, Mtangirwa Judith, Ncube Kwenzakwenkosi, Ford Nathan, Kranzer Katharina, Munyaradzi Dhodho. Antiretroviral Therapy Outcomes among Adolescents and Youth in Rural Zimbabwe. PLoS ONE. 2012;7(12):e52856. doi: 10.1371/journal.pone.0052856.
    1. Uganda AIDS Commission. New report shows levels of HIV discrimination in Uganda 2013 [Available from: .
    1. Makoae LN, Portillo CJ, Uys LR, Dlamini PS, Greeff M, Chirwa M, et al. The impact of taking or not taking ARVs on HIV stigma as reported by persons living with HIV infection in five African countries. AIDS Care. 2009;21(11):1357–1362. doi: 10.1080/09540120902862576.
    1. Chan BT, Weiser SD, Boum Y, Siedner MJ, Mocello AR, Haberer JE, et al. Persistent HIV-related stigma in rural Uganda during a period of increasing HIV incidence despite treatment expansion. AIDS (London, England) 2015;29(1):83. doi: 10.1097/QAD.0000000000000495.
    1. Tsai AC, Bangsberg DR, Bwana M, Haberer JE, Frongillo EA, Muzoora C, et al. How does antiretroviral treatment attenuate the stigma of HIV? Evidence from a cohort study in rural Uganda. AIDS Behav. 2013;17(8):2725–2731. doi: 10.1007/s10461-013-0503-3.
    1. Ministry of Education & Sports. Education and Sports Sector National Policy Guidelines on HIV/AIDS. Kampala, Uganda: MoES, Republic of Uganda; 2006.
    1. Birungi HO, F.; Katahoire, a.; Kibenge, D. . HIV infection and schooling experiences of adolescents in Uganda. In: Letamo G, editor. Social and psychological aspects of HIV/AIDS and their ramifications. New York: Intech; 2011.

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