Advertisement

Current HIV/AIDS Reports

, Volume 13, Issue 3, pp 177–185 | Cite as

Understanding Sustained Retention in HIV/AIDS Care and Treatment: a Synthetic Review

  • Monika Roy
  • Nancy Czaicki
  • Charles Holmes
  • Saurabh Chavan
  • Apollo Tsitsi
  • Thomas Odeny
  • Izukanji Sikazwe
  • Nancy Padian
  • Elvin Geng
The Global Epidemic (SH Vermund, Section Editor)
Part of the following topical collections:
  1. Topical Collection on The Global Epidemic

Abstract

Sustained retention represents an enduring and evolving challenge to HIV treatment programs in Africa. We present a theoretical framework for sustained retention borrowing from ecologic principles of sustainability and dynamic adaptation. We posit that sustained retention from the patient perspective is dependent on three foundational principles: (1) patient activation: the acceptance, prioritization, literacy, and skills to manage a chronic disease condition, (2) social normalization: the engagement of a social network and harnessing social capital to support care and treatment, and (3) livelihood routinization: the integration of care and treatment activities into livelihood priorities that may change over time. Using this framework, we highlight barriers specific to sustained retention and review interventions addressing long-term, sustained retention in HIV care with a focus on Sub-Saharan Africa.

Keywords

HIV care and treatment Retention Sustainability Patient activation Treatment literacy Social network Social capital Community-based care Health maintenance 

Notes

Compliance With Ethical Standards

Conflict of Interest

Monika Roy, Nancy Czaicki, Charles Holmes, Saurabh Chavan, Apollo Tsitsi, Thomas Odeny, Izukanji Sikazwe, Nancy Padian, and Elvin Geng declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

References

Papers of particular interest published recently have been highlighted as: • Of importance

  1. 1.
    World Health Organization. Retention in HIV programmes: defining the challenges and identifying solutions: meeting report. Geneva, Switzerland; 2011. p. 13–5.Google Scholar
  2. 2.
    Tuller DM, Bangsberg DR, Senkungu J, Ware NC, Emenyonu N, Weiser SD. Transportation costs impede sustained adherence and access to HAART in a clinic population in Southwestern Uganda: a qualitative study. AIDS Behav. 2010;14:778–84.Google Scholar
  3. 3.
    Amanyire G, Wanyenze R, Alamo S, Kwarisiima D, Sunday P, Sebikaari G, et al. Client and provider perspectives of the efficiency and quality of care in the context of rapid scale-up of antiretroviral therapy. AIDS Patient Care STDs. 2010;24:719–27.CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Wanyenze RK, Wagner G, Alamo S, Amanyire G, Ouma J, Kwarisima D, et al. Evaluation of the efficiency of patient flow at three HIV clinics in Uganda. AIDS Patient Care STDs. 2010;24:441–6.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Fay H, Baral SD, Trapence G, Motimedi F, Umar E, Iipinge S, et al. Stigma, health care access, and HIV knowledge among men who have sex with men in Malawi, Namibia, and Botswana. AIDS Behav. 2011;15:1088–97.CrossRefPubMedGoogle Scholar
  6. 6.
    Rosen S, Fox MP, Gill CJ. Patient retention in antiretroviral therapy programs in sub-Saharan Africa: a systematic review. PLoS Med. 2007;4:e298.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.•
    The most comprehensive review of currently available data on medium to long-term retention in HIV treatment programsGoogle Scholar
  8. 8.
    Claborn KR, Meier E, Miller MB, Leffingwell TR. A systematic review of treatment fatigue among HIV-infected patients prescribed antiretroviral therapy. Psychol Health Med. 2015;20:255–65.CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Thirumurthy H, Goldstein M, Graff Zivin J. The economic impact of AIDS treatment: labor supply in western Kenya. J Hum Resour. 2008;43:511–52.PubMedPubMedCentralGoogle Scholar
  10. 10.
    Thirumurthy H, Zivin JG, Goldstein M. The economic impact of AIDS treatment. J Hum Resour. 2008;43:511–22.PubMedPubMedCentralGoogle Scholar
  11. 11.
    Heckman BW, Mathew AR, Carpenter MJ. Treatment burden and treatment fatigue as barriers to health. Curr Opin Psychol. 2015;5:31–6.CrossRefPubMedGoogle Scholar
  12. 12.
    Bettencourt LM, Kaur J. Evolution and structure of sustainability science. Proc Natl Acad Sci. 2011;108:19540–5.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Kates RW. What kind of a science is sustainability science? Proc Natl Acad Sci. 2011;108:19449–50.CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Gruen RL, Elliott JH, Nolan ML, Lawton PD, Parkhill A, McLaren CJ, et al. Sustainability science: an integrated approach for health-programme planning. Lancet. 2008;372:1579–89.CrossRefPubMedGoogle Scholar
  15. 15.•
    Chambers DA, Glasgow RE, Stange KC. The dynamic sustainability framework: addressing the paradox of sustainment amid ongoing change. Implement Sci. 2013;8:117. This paper provides an elegant model for describing the sustainability of public health interventions within an ecological framework.CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Smith LR, Fisher JD, Cunningham CO, Amico KR. Understanding the behavioral determinants of retention in HIV care: a qualitative evaluation of a situated information, motivation, behavioral skills model of care initiation and maintenance. AIDS Patient Care STDs. 2012;26:344–55.CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Christopoulos KA, Massey AD, Lopez AM, Geng EH, Johnson MO, Pilcher CD, et al. “Taking a half day at a time:” patient perspectives and the HIV engagement in care continuum. AIDS Patient Care STDs. 2013;27:223–30.CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Merten S, Kenter E, McKenzie O, Musheke M, Ntalasha H, Martin-Hilber A. Patient-reported barriers and drivers of adherence to antiretrovirals in sub-Saharan Africa: a meta-ethnography. Trop Med Int Health. 2010;15 Suppl 1:16–33.CrossRefPubMedGoogle Scholar
  19. 19.
    Wachira J, Middlestadt S, Reece M, Peng CY, Braitstein P. Physician communication behaviors from the perspective of adult HIV patients in Kenya. Int J Qual Health Care. 2014;26:190–7.CrossRefPubMedGoogle Scholar
  20. 20.•
    Ware NC, Wyatt MA, Geng EH, Kaaya SF, Agbaji OO, Muyindike WR, et al. Toward an understanding of disengagement from HIV treatment and care in sub-Saharan Africa: a qualitative study. PLoS Med. 2013;10:e1001369. A large-scale qualitative study conducted in three sub-Saharan African countries that critically examines barriers to retention in care.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Gourlay A, Wringe A, Birdthistle I, Mshana G, Michael D, Urassa M. “It is like that, we didn’t understand each other”: exploring the influence of patient-provider interactions on prevention of mother-to-child transmission of HIV service use in rural Tanzania. PLoS One. 2014;9:e106325.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Musheke M, Bond V, Merten S. Deterrents to HIV-patient initiation of antiretroviral therapy in urban Lusaka, Zambia: a qualitative study. AIDS Patient Care STDs. 2013;27:231–41.CrossRefPubMedGoogle Scholar
  23. 23.
    Thielman NM, Ostermann J, Whetten K, Whetten R, Itemba D, Maro V, et al. Reduced adherence to antiretroviral therapy among HIV-infected Tanzanians seeking cure from the Loliondo healer. J Acquir Immune Defic Syndr. 2014;65:e104–109.CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Ware NC, Idoko J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, et al. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Med. 2009;6:e11.CrossRefPubMedGoogle Scholar
  25. 25.
    Wohl AR, Galvan FH, Myers HF, Garland W, George S, Witt M, et al. Do social support, stress, disclosure and stigma influence retention in HIV care for Latino and African American men who have sex with men and women? AIDS Behav. 2011;15:1098–110.CrossRefPubMedGoogle Scholar
  26. 26.
    Arrive E, Dicko F, Amghar H, Aka AE, Dior H, Bouah B, et al. HIV status disclosure and retention in care in HIV-infected adolescents on antiretroviral therapy (ART) in West Africa. PLoS One. 2012;7:e33690.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Smith R, Rossetto K, Peterson BL. A meta-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008;20:1266–75.CrossRefPubMedGoogle Scholar
  28. 28.
    Thirumurthy H, Zivin JG, Goldstein M. The economic impact of AIDS treatment: labor supply in Western Kenya. J Hum Resour. 2008;43:511–52.PubMedPubMedCentralGoogle Scholar
  29. 29.
    Venkataramani AS, Thirumurthy H, Haberer JE, Ii YB, Siedner MJ, Kembabazi A, et al. CD4+ cell count at antiretroviral therapy initiation and economic restoration in rural Uganda. AIDS. 2014;28:1221–6.CrossRefPubMedPubMedCentralGoogle Scholar
  30. 30.
    Geng EH, Bwana MB, Muyindike W, Glidden DV, Bangsberg DR, Neilands TB, et al. Failure to initiate antiretroviral therapy, loss to follow-up and mortality among HIV-infected patients during the pre-ART period in Uganda. J Acquir Immune Defic Syndr. 2013;63:e64–71.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
  32. 32.
    Conley NJ, Pavlinac PB, Guthrie BL, Mackelprang RD, Muiru AN, Choi RY, et al. Distance from home to study clinic and risk of follow-up interruption in a cohort of HIV-1-discordant couples in Nairobi, Kenya. PLoS One. 2012;7:e43138.CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Geng EH, Odeny TA, Lyamuya R, Nakiwogga-Muwanga A, Diero L, Bwana M, et al. Retention in care and patient-reported reasons for undocumented transfer or stopping care among HIV-infected patients on antiretroviral therapy in Eastern Africa: application of a sampling-based approach. Clin Infect Dis. 2016;62:935–44.Google Scholar
  34. 34.
    Roux P, Kouanfack C, Cohen J, Marcellin F, Boyer S, Delaporte E, et al. Adherence to antiretroviral treatment in HIV-positive patients in the Cameroon context: promoting the use of medication reminder methods. J Acquir Immune Defic Syndr. 2011;57 Suppl 1:S40–43.PubMedGoogle Scholar
  35. 35.
    Weiser SD, Tsai AC, Gupta R, Frongillo EA, Kawuma A, Senkungu J, et al. Food insecurity is associated with morbidity and patterns of healthcare utilization among HIV-infected individuals in a resource-poor setting. AIDS. 2012;26:67–75.CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Mbonye M, Seeley J, Ssembajja F, Birungi J, Jaffar S. Adherence to antiretroviral therapy in Jinja, Uganda: a six-year follow-up study. Plos One. 2013;8(10):e78243.Google Scholar
  37. 37.
    Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39:1005–26.CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Dowse R, Barford K, Browne SH. Simple, illustrated medicines information improves ARV knowledge and patient self-efficacy in limited literacy South African HIV patients. AIDS Care. 2014;26:1400–6.CrossRefPubMedPubMedCentralGoogle Scholar
  39. 39.
    Tique JA, Howard LM, Gaveta S, Sidat M, Rothman RL, Vermund SH, et al. Measuring health literacy among adults with HIV infection in Mozambique: development and validation of the HIV literacy test. AIDS Behav. 2016. doi: 10.1007/s10461-016-1348-3
  40. 40.•
    Maclachlan EW, Shepard-Perry MG, Ingo P, Uusiku J, Mushimba R, Simwanza R, et al. Evaluating the effectiveness of patient education and empowerment to improve patient-provider interactions in antiretroviral therapy clinics in Namibia. AIDS Care. 2016;28:620–7. This paper describes a novel intervention to improve patient-provider communication, an important element of chronic disease management that has not been well evaluated in HIV care and treatment programs in sub-Saharan Africa. Google Scholar
  41. 41.
    Mundell JP, Visser MJ, Makin JD, Kershaw TS, Forsyth BW, Jeffery B, et al. The impact of structured support groups for pregnant South African women recently diagnosed HIV positive. Women Health. 2011;51:546–65.CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Kennedy CE, Fonner VA, Armstrong KA, O’Reilly KR, Sweat MD. Increasing HIV serostatus disclosure in low and middle-income countries: a systematic review of intervention evaluations. AIDS. 2015;29 Suppl 1:S7–S23.CrossRefPubMedGoogle Scholar
  43. 43.
    Coates TJ, Kulich M, Celentano DD, Zelaya CE, Chariyalertsak S, Chingono A, et al. Effect of community-based voluntary counselling and testing on HIV incidence and social and behavioural outcomes (NIMH Project Accept; HPTN 043): a cluster-randomised trial. Lancet Glob Health. 2014;2:e267–277.CrossRefPubMedPubMedCentralGoogle Scholar
  44. 44.
    Jurgensen M, Sandoy IF, Michelo C, Fylkesnes K, Group ZS. Effects of home-based voluntary counselling and testing on HIV-related stigma: findings from a cluster-randomized trial in Zambia. Soc Sci Med. 2013;81:18–25.CrossRefPubMedGoogle Scholar
  45. 45.
    Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? J Int AIDS Soc. 2013;16:18734.CrossRefPubMedPubMedCentralGoogle Scholar
  46. 46.
    Wouters E, Meulemans H, van Rensburg HC. Slow to share: social capital and its role in public HIV disclosure among public sector ART patients in the Free State province of South Africa. AIDS Care. 2009;21:411–21.CrossRefPubMedGoogle Scholar
  47. 47.
    Bateganya MH, Amanyeiwe U, Roxo U, Dong M. Impact of support groups for people living with HIV on clinical outcomes: a systematic review of the literature. J Acquir Immune Defic Syndr. 2015;68 Suppl 3:S368–374.CrossRefPubMedPubMedCentralGoogle Scholar
  48. 48.
    Snyder K WM, Duby Z, Aquino LDH, Stafford S, Hosek S, et al. Preliminary results from Hlanganani (coming together): a structured support group for HIV-infected adolescents piloted in Cape Town, South Africa. Child Youth Serv Res. 2014:114-121.Google Scholar
  49. 49.
    Tirivayi N, Koethe JR, Groot W. Clinic-based food assistance is associated with increased medication adherence among HIV-infected adults on long-term antiretroviral therapy in Zambia. J AIDS Clin Res. 2012;3:171.CrossRefPubMedPubMedCentralGoogle Scholar
  50. 50.•
    Grimsrud A, Lesosky M, Kalombo C, Bekker LG, Myer L. Implementation and operational research: community-based adherence clubs for the management of stable antiretroviral therapy patients in Cape Town, South Africa: a cohort study. J Acquir Immune Defic Syndr. 2016;71:e16–23. This paper provides outcome data on a novel community-based care strategy- community adherence clubs that has been rapidly scaled-up in South Africa.CrossRefPubMedGoogle Scholar
  51. 51.
    Grimsrud A, Sharp J, Kalombo C, Bekker LG, Myer L. Implementation of community-based adherence clubs for stable antiretroviral therapy patients in Cape Town, South Africa. J Int AIDS Soc. 2015;18:19984.CrossRefPubMedPubMedCentralGoogle Scholar
  52. 52.
    Luque-Fernandez MA, Van Cutsem G, Goemaere E, Hilderbrand K, Schomaker M, Mantangana N, et al. Effectiveness of patient adherence groups as a model of care for stable patients on antiretroviral therapy in Khayelitsha, Cape Town, South Africa. PLoS One. 2013;8:e56088.CrossRefPubMedPubMedCentralGoogle Scholar
  53. 53.
    Okoboi S, Ding E, Persuad S, Wangisi J, Birungi J, Shurgold S, et al. Community-based ART distribution system can effectively facilitate long-term program retention and low-rates of death and virologic failure in rural Uganda. AIDS Res Ther. 2015;12:37.CrossRefPubMedPubMedCentralGoogle Scholar
  54. 54.
    Babigumira JB, Sethi AK, Smyth KA, Singer ME. Cost effectiveness of facility-based care, home-based care and mobile clinics for provision of antiretroviral therapy in Uganda. Pharmacoeconomics. 2009;27:963–73.CrossRefPubMedPubMedCentralGoogle Scholar
  55. 55.
    Jaffar S, Amuron B, Foster S, Birungi J, Levin J, Namara G, et al. 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. Lancet. 2009;374:2080–9.CrossRefPubMedPubMedCentralGoogle Scholar
  56. 56.
    Selke HM, Kimaiyo S, Sidle JE, Vedanthan R, Tierney WM, Shen C, et al. Task-shifting of antiretroviral delivery from health care workers to persons living with HIV/AIDS: clinical outcomes of a community-based program in Kenya. J Acquir Immune Defic Syndr. 2010;55:483–90.CrossRefPubMedGoogle Scholar
  57. 57.
    Kipp W, Konde-Lule J, Saunders LD, Alibhai A, Houston S, Rubaale T, et al. Antiretroviral treatment for HIV in rural Uganda: two-year treatment outcomes of a prospective health centre/community-based and hospital-based cohort. PLoS One. 2012;7:e40902.CrossRefPubMedPubMedCentralGoogle Scholar
  58. 58.
    Horvath T, Azman H, Kennedy GE, Rutherford GW. Mobile phone text messaging for promoting adherence to antiretroviral therapy in patients with HIV infection. Cochrane Database Syst Rev. 2012;3:CD009756.PubMedGoogle Scholar
  59. 59.
    Mbuagbaw L, Mursleen S, Lytvyn L, Smieja M, Dolovich L, Thabane L. Mobile phone text messaging interventions for HIV and other chronic diseases: an overview of systematic reviews and framework for evidence transfer. BMC Health Serv Res. 2015;15:33.CrossRefPubMedPubMedCentralGoogle Scholar
  60. 60.
    Odeny TA, Bukusi EA, Cohen CR, Yuhas K, Camlin CS, McClelland RS. Texting improves testing: a randomized trial of two-way SMS to increase postpartum prevention of mother-to-child transmission retention and infant HIV testing. AIDS. 2014;28:2307–12.CrossRefPubMedPubMedCentralGoogle Scholar
  61. 61.
    Weiser SD, Bukusi EA, Steinfeld RL, Frongillo EA, Weke E, Dworkin SL, et al. Shamba Maisha: randomized controlled trial of an agricultural and finance intervention to improve HIV health outcomes. AIDS. 2015;29:1889–94.CrossRefPubMedGoogle Scholar
  62. 62.
    Rasschaert F, Decroo T, Remartinez D, Telfer B, Lessitala F, Biot M, et al. Sustainability of a community-based anti-retroviral care delivery model—a qualitative research study in Tete, Mozambique. J Int AIDS Soc. 2014;17:18910.CrossRefPubMedPubMedCentralGoogle Scholar
  63. 63.
    Decroo T, Koole O, Remartinez D, dos Santos N, Dezembro S, Jofrisse M, et al. Four-year retention and risk factors for attrition among members of community ART groups in Tete, Mozambique. Trop Med Int Health. 2014;19:514–21.CrossRefPubMedGoogle Scholar
  64. 64.
    Decroo T, Telfer B, Biot M, Maikere J, Dezembro S, Cumba LI, et al. Distribution of antiretroviral treatment through self-forming groups of patients in Tete Province, Mozambique. J Acquir Immune Defic Syndr. 2011;56:e39–44.CrossRefPubMedGoogle Scholar
  65. 65.
    Rasschaert F, Telfer B, Lessitala F, Decroo T, Remartinez D, Biot M, et al. A qualitative assessment of a community antiretroviral therapy group model in Tete, Mozambique. PLoS One. 2014;9:e91544.CrossRefPubMedPubMedCentralGoogle Scholar
  66. 66.•
    Hickey MD, Salmen CR, Omollo D, Mattah B, Fiorella KJ, Geng EH, et al. Implementation and operational research: pulling the network together: quasiexperimental trial of a patient-defined support network intervention for promoting engagement in HIV care and medication adherence on Mfangano Island, Kenya. J Acquir Immune Defic Syndr. 2015;69:e127–134. This paper describes a novel intervention utilizing an individual’s existing social network to improve retention in HIV care and to increase uptake of HIV testing among all members of the social network.CrossRefPubMedGoogle Scholar
  67. 67.
    Salmen CR, Hickey MD, Fiorella KJ, Omollo D, Ouma G, Zoughbie D, et al. “Wan Kanyakla” (We are together): community transformations in Kenya following a social network intervention for HIV care. Soc Sci Med. 2015;147:332–40.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Monika Roy
    • 1
  • Nancy Czaicki
    • 2
  • Charles Holmes
    • 3
    • 4
  • Saurabh Chavan
    • 1
  • Apollo Tsitsi
    • 5
  • Thomas Odeny
    • 6
    • 7
  • Izukanji Sikazwe
    • 3
  • Nancy Padian
    • 2
  • Elvin Geng
    • 1
  1. 1.University of California San FranciscoSan FranciscoUSA
  2. 2.University of California BerkeleyBerkeleyUSA
  3. 3.Centre for Infectious Diseases Research ZambiaZambiaAfrica
  4. 4.Johns Hopkins UniversityBaltimoreUSA
  5. 5.Ministry of Health and Child CareZimbabweAfrica
  6. 6.Kenya Medical Research Institute, Center for Microbiology ResearchNairobiKenya
  7. 7.University of WashingtonSeattleUSA

Personalised recommendations