Introduction We report on the adherence experience of a group of people living with HIV on ART over six years in Uganda. Methods Between 2005 and 2009, we followed up 41 participants who were also part of a clinical trial comparing home and facility based delivery of ART in Jinja, eastern Uganda. We conducted qualitative in-depth interviews at enrolment, 3, 6, 18 and 30 months to capture experiences with adherence over time. In 2011 we returned to these participants to find out how they were fairing with long term adherence. We managed to retrace 24 participants and interviewed them about their experience. We thematically analysed the data and compared findings over time. Results Initially there were few barriers to adherence and many followed the adherence guidance closely. By year six, relaxation of these rules was noticeable although self-reported adherence continued to be high. Alcohol consumption was more common than before. Some relatives of the participants who had died claimed that some deaths were a result of alcohol. While participants reported that ART had allowed them to reclaim independence and return to work the changes in work and social routines created new challenges for adherence. Side effects like lipodystrophy were not only causing some stigma but for some tested their faith in the drugs. Many participants reported resumption of sexual lives but apart from those who selected same status partners, disclosure to new partners was minimal. Conclusion Good adherence practice to ART wanes over the long-term, and people who may have disclosed at initiation find it difficult to do so to new partners once they are healthy. Further adherence interventions and support with disclosure over the course of therapy may need to be considered. (Words: 283)
References
[1]
Verguet S, Lim SS, Murray CJ, Gakidou E, Salomon JA (2013) Incorporating loss to follow-up in estimates of survival among HIV-infected individuals in sub-Saharan Africa enrolled in antiretroviral therapy programs. J Infect Dis 207: 72-79. doi:10.1093/infdis/jis635. PubMed: 23100567.
[2]
Mills EJ, Nachega JB, Bangsberg DR, Singh S, Rachlis B et al. (2006) Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators. PLOS Med 3: e438. doi:10.1371/journal.pmed.0030438. PubMed: 17121449.
[3]
Rosen S, Fox MP, Gill CJ (2007) Patient retention in antiretroviral therapy programs in sub-Saharan Africa: a systematic review. PLOS Med 4: 1691-1701. PubMed: 17941716.
[4]
Malta M, Strathdee SA, Magnanini MM, Bastos FI (2008) Adherence to antiretroviral therapy for human immunodeficiency virus/acquired immune deficiency syndrome among drug users: a systematic review. J Addict 103: 1242-1257. doi:10.1111/j.1360-0443.2008.02269.x. PubMed: 18855813.
[5]
Cauldbeck MB, O'Connor C, O'Connor MB, Saunders JA, Rao B et al. (2009) Adherence to anti-retroviral therapy among HIV patients in Bangalore, India. AIDS Res Ther 6: 7. doi:10.1186/1742-6405-6-7. PubMed: 19400929.
[6]
Nakimuli-Mpungu E, Bass JK, Alexandre P, Mills EJ, Musisi S et al. (2012) Depression, alcohol use and adherence to antiretroviral therapy in sub-Saharan Africa: a systematic review. AIDS Behav 16: 2101-2118. doi:10.1007/s10461-011-0087-8. PubMed: 22116638.
[7]
Dieffenbach CW, Fauci AS (2009) Universal voluntary testing and treatment for prevention of HIV transmission. JAMA 301: 2380-2382. doi:10.1001/jama.2009.828. PubMed: 19509386.
[8]
Gardner EM, McLees MP, Steiner JF, Del Rio C, Burman WJ (2011) The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis 52: 793-800. doi:10.1093/cid/ciq243. PubMed: 21367734.
[9]
Mills EJ, Nachega JB, Buchan I, Orbinski J, Attaran A et al. (2006) Adherence to antiretroviral therapy in sub-Saharan Africa and North America: a meta-analysis. JAMA 296: 679-690. doi:10.1001/jama.296.6.679. PubMed: 16896111.
[10]
Jaffar S, Munderi P, Grosskurth H (2008) Adherence to antiretroviral therapy in Africa: how high is it really? Trop Med Int Health 13: 1096-1097. doi:10.1111/j.1365-3156.2008.02131.x. PubMed: 18664239.
[11]
Barroso J, Powell-Cope GM (2000) Metasynthesis of qualitative research on living with HIV infection. Qual Health Res 10: 340-353. doi:10.1177/104973200129118480. PubMed: 10947480.
[12]
Baumgartner LM (2007) The Incorporation of the HIV/AIDS Identity Into the Self Over Time. Qual Health Res 17: 919-931. doi:10.1177/1049732307305881. PubMed: 17724104.
[13]
Russell S, Seeley J, Ezati E, Wamai N, Were W et al. (2007) Coming back from the dead: living with HIV as a chronic condition in rural Africa Health Policy Plan 22: 344-347. doi:10.1093/heapol/czm023. PubMed: 17646187.
[14]
Castro A (2005) Adherence to antiretroviral therapy: merging the clinical and social course of AIDS. PLOS Med 2: e338. doi:10.1371/journal.pmed.0020338. PubMed: 16187735.
[15]
Jaffar S, Amuron B, Foster S, Birungi J, Levin J et al. (2009) Rates of virological failure in patients treated in a home-based versus a facility-based HIV-care model in Jinja, southeast Uganda: a cluster-randomised equivalence trial. J Lancet 374: 2080-2089. doi:10.1016/S0140-6736(09)61674-3.
[16]
Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF et al. (2007) Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care 19: 658-665. doi:10.1080/09540120701244943. PubMed: 17505927.
[17]
Mallory JO, Neilands TB (2007) Coping with HIV treatment side effects: conceptualization, measurement, and linkages. AIDS Behav 11: 575-585. doi:10.1007/s10461-007-9229-4. PubMed: 17436074.
[18]
Chesney MA (2000) Factors affecting adherence to antiretroviral therapy. Clin Infect Dis 30 Suppl 2: S171-S176. doi:10.1086/313849. PubMed: 10860902.
[19]
McNicholl IR (2008) Strategies to enhance adherence, reduce costs, and improve patient quality of life. J Manag Care Pharm 14: S12-S16.
[20]
Dlamini PS, Wantland D, Makoae LN, Chirwa M, Kohi TW et al. (2009) HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDs 23: 377-387. doi:10.1089/apc.2008.0164. PubMed: 19327098.
[21]
Mahajan AP, Sayles JN, Patel VA, Remien RH, Sawires SR et al. (2008) Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 22 Suppl 2: S67-S79. doi:10.1097/QAD.0b013e3282f2306e. PubMed: 18641472.
[22]
Allen C, Mbonye M, Seeley J, Birungi J, Wolff B et al. (2011) ABC for people with HIV: responses to sexual behaviour recommendations among people receiving antiretroviral therapy in Jinja, Uganda. Cult Health Sex 13: 529-543. doi:10.1080/13691058.2011.558593. PubMed: 21390948.
[23]
Mpiima D, Alinga S, Ngolobe M (2011) Community drug distribution points(CDDPs) for decongestion of facility clinics, improve ART accessibility, quality and community collaboration. 6th IAS Conference on HIV. Pathogenesis and Treatment Abstract No. CDD042.
[24]
Sandstrom KL (1990) Confronting deadly disease: The drama of identity construction among gay men with AIDS. J ContemP Ethnogr 19: 271-294. doi:10.1177/089124190019003002.
[25]
Baumgartner LM, Keegan ND (2009) Accepting being Poz: The incorporation of the HIV identity into the self. Qual Health Res 19: 1730-1743. doi:10.1177/1049732309352907. PubMed: 19949222.
[26]
Ssebbanja P (2007) United against AIDS: the story of TASO. Kampala, Uganda: The AIDS Support Organisation.
[27]
Wolff B, Mbonye M, Coutinho A, Amuron B, Nkabala R et al. (2009) High levels of psychosocial readiness for ART in an African population at the onset of treatment. Sahara J 6: 188-194. doi:10.1080/17290376.2009.9724947. PubMed: 20485858.
[28]
Foster SD, Nakamanya S, Kyomuhangi R, Amurwon J, Namara G et al. (2010) The experience of "medicine companions" to support adherence to antiretroviral therapy: quantitative and qualitative data from a trial population in Uganda. AIDS Care 22 Suppl 1: 35-43. doi:10.1080/09540120903500027. PubMed: 20680859.
[29]
King R, Khana K, Nakayiwa S, Katuntu D, Homsy J et al. (2011) 'Pregnancy comes accidentally - like it did with me': reproductive decisions among women on ART and their partners in rural Uganda. BMC Public Health 11 (503).
[30]
Seeley J, Russell S, Khana K, Ezati E, King R et al. (2009) Sex after ART: sexual partnerships established by HIV-infected persons taking anti-retroviral therapy in Eastern Uganda. Cult Health Sex 11: 703-716. doi:10.1080/13691050903003897. PubMed: 19544115.
[31]
Besada D, Van Cutsem G, Goemaere E, Ford N, Bygrave H et al. ( 2012) The case for Option B and Optional B+: Ensuring that South Africa’s commitment to eliminating mother-to-child transmission of HIV becomes a reality. South Afr J HIV Med 13: 178-181.
[32]
Chander G, Lau B, Moore RD (2006) Hazardous alcohol use: a risk factor for non-adherence and lack of suppression in HIV infection. J_Acquir Immune Defic Syndr 43: 411-417. doi:10.1097/01.qai.0000243121.44659.a4. PubMed: 17099312.
[33]
Ware NC, Wyatt MA, Tugenberg T (2006) Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS. AIDS Care 18: 904-910. doi:10.1080/09540120500330554. PubMed: 17012079.
