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

Roy, Monika; Czaicki, Nancy; Holmes, Charles; Chavan, Saurabh; Tsitsi, Apollo; Odeny, Thomas; Sikazwe, Izukanji; Padian, Nancy; Geng, Elvin

doi:10.1007/s11904-016-0317-9

Cited by 35HIV/AIDS Research and InterventionsHIV/AIDS Impact and ResponsesHIV, Drug Use, Sexual Risk

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

Roy, Monika, Czaicki, Nancy, Holmes, Charles, Chavan, Saurabh, Tsitsi, Apollo, Odeny, Thomas, Sikazwe, Izukanji, Padian, Nancy +1 more·2016·Current HIV/AIDS Reports

DOI 10.1007/s11904-016-0317-9

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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.

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The ability of an initiative to share resources with partners and other organisations, seek out alternative and supplemental resources and/or uncover multiple funding sources were highlighted across some approaches as important to overall sustainability.
“The ability of an initiative to share resources with partners and other organisations [41, 46], seek out alternative and supplemental resources [18, 47–49] and/or uncover multiple funding sources [8, 36, 49, 50] were also highlighted across some approaches as important to overall sustainability.”
From Navigating the sustainability landscape: a systematic review of sustainability approaches in healthcare (2018) · cites this paper as [48]

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“[48] 2016 Framework for Sustained Retention To understand sustained retention, highlight barriers specific to sustained retention and review interventions addressing long-term, sustained retention Lennox et al.”
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Understanding mobility and sexual risk behaviour among women in fishing communities of Lake Victoria in East Africa: a qualitative study
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Trajectories of HIV-related internalized stigma and disclosure concerns among art initiators and noninitiators in South Africa.
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“…campaigns or contact interventions (Chan & Tsai, 2017; Stangl, Lloyd, 18 Brady, Holland, & Baral, 2013) or initiatives to help PLHIV build skills to cope with a 19 stigmatizing environment such as support groups and patient empowerment interventions 20 (Bogart et al., 2018; Roy et al., 2016).”
Background
Nurse-led HIV services and quality of care at health facilities in Kenya, 2014–2016
Rabkin, M., Lamb, M. R., Osakwe, Z. T., Mwangi, P. R., El-Sadr, W. M., & Michaels-Strasser, S. (2017) · Bulletin of the World Health Organization · doi:10.2471/blt.16.180646 · Cited by 19 · see citing works
SEARCH Human Immunodeficiency Virus (HIV) Streamlined Treatment Intervention Reduces Mortality at a Population Level in Men With Low CD4 Counts
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Improved Viral Suppression With Streamlined Care in the SEARCH Study
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Pre-exposure prophylaxis use among HIV serodiscordant couples: a qualitative study in Mozambique
Sack, D. E., Schacht, C. D., Paulo, P., Graves, E., Emílio, A. M., Matino, A., Fonseca, C. L., Aboobacar, A., Rompaey, S. V., & Audet, C. M. (2021) · Global Health Action · doi:10.1080/16549716.2021.1940764 · Cited by 17 · see citing works
Community perspectives of South African adolescents’ experiences seeking treatment at local HIV clinics and how such clinics may influence engagement in the HIV treatment cascade: a qualitative study
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“lead to greater HIV acceptance and better outcomes among ALWH (Roy et al., 2016; World Health Organization, 2013).”
Background
The Kanyakla study: Randomized controlled trial of a microclinic social network intervention for promoting engagement and retention in HIV care in rural western Kenya
Hickey, M. D., Ouma, G. B., Mattah, B. J., Pederson, B., DesLauriers, N. R., Mohamed, P., Obanda, J., Odhiambo, A., Njoroge, B. W., Otieno, L., et al. (2021) · PLoS ONE · doi:10.1371/journal.pone.0255945 · Cited by 15 · see citing works
Self-citation
La qualité des services de santé : Un impératif mondial en vue de la couverture santé universelle
OCDE, & mondiale, G. D. L. B. (2019) · doi:10.1787/62f287af-fr · Cited by 16 · see citing works
Durable Viral Suppression Among People with HIV and Problem Substance Use in the Era of Universal Antiretroviral Treatment
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Addressing Early Retention in Antenatal Care Among HIV-Positive Women Through a Simple Intervention in Kinshasa, DRC: The Elombe “Champion” Standard Operating Procedure
Gill, M. M., Ditekemena, J., Loando, A., Mbonze, N., Bakualufu, J., Machekano, R. N., Gbomosa, C. N., Temmerman, M., & Fwamba, F. (2017) · AIDS and Behavior · doi:10.1007/s10461-017-1770-1 · Cited by 11 · see citing works
Attitudes towards and experiences with economic incentives for engagement in HIV care and treatment: Qualitative insights from a randomized trial in Kenya
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Self-citation
Disclosure of Parental HIV Status to Children: Experiences of Adults Receiving Antiretroviral Treatment at an Urban Clinic in Kampala, Uganda
Osingada, C. P., Okuga, M., Nabirye, R. C., Sewankambo, N. K., & Nakanjako, D. (2017) · AIDS Research and Treatment · doi:10.1155/2017/3458684 · Cited by 7 · see citing works
“A decrease in HIV-related deaths [4] coupled with an increase in the number of people accessing antiretroviral treatment has given birth to the phenomenonof social normalization ofHIV andAIDS [5] which according to Roy and colleagues depends on both disclosure of HIV status to a person’s social networks andwillingness…”
Background
Uptake of appointment spacing model of care and associated factors among stable adult HIV clients on antiretroviral treatment Northwest Ethiopia
Asrade, A. A., Moges, N. A., Tadele, M. M., Alemu, K. D., Tsega, T. D., Petrucka, P. M., & Telayneh, A. T. (2022) · PLoS ONE · doi:10.1371/journal.pone.0279760 · Cited by 5 · see citing works
Cross-sectional study to assess depression among healthcare workers in Lusaka, Zambia during the COVID-19 pandemic
Simbeza, S., Mutale, J., Mulabe, M., Jere, L., Bukankala, C., Sikombe, K., Sikazwe, I. T., Bolton‐Moore, C., Mody, A., Geng, E. H., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-069257 · Cited by 5 · see citing works
Self-citation
Patient perceptions of facilitators and barriers to reducing hazardous alcohol use among people living with HIV in East Africa
Lewis-Kulzer, J., Mburu, M., Obatsa, S., Cheruiyot, J., Kiprono, L., Brown, S. A., Apaka, C., Koros, H., Muyindike, W. R., Kwobah, E. K., et al. (2023) · Substance Abuse Treatment Prevention and Policy · doi:10.1186/s13011-023-00520-7 · Cited by 4 · see citing works
Building a theory of change for community development and HIV programming: The impact of social capital, stigma reduction and community-level changes on HIV-related health outcomes for orphans and vulnerable households in Mozambique
Thompson, G. H., & Moret, W. (2019) · Community Development · doi:10.1080/15575330.2019.1606839 · Cited by 3 · see citing works
“Researchers have found that social capital, social network engagement, and forms of social support can support patient retention in HIV treatments (Roy et al., 2016), lead to greater quality of life for PLHIV (Jong, Carrico, Cooper, Thompson, & Portillo, 2017), and improve mental health outcomes…”
Background
Enablers of adherence to clinic appointments for children attending an antiretroviral clinic in Northern Nigeria: Perspectives of caregivers and care providers
Musa, S. S., Umar, L. W., Abdullahi, F., Taegtemeyer, M., Abdullahi, S. M., Olorukooba, A. A., Alfa, A. M., & Usman, N. (2018) · Journal of Tropical Pediatrics · doi:10.1093/tropej/fmy047 · Cited by 1 · see citing works
Investigating the follow-up discontinuation among people living with HIV in North Shoa Zone, Oromia, Ethiopia
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Uptake of Appointment Spacing Model of Care and Determinants Among Adult Clients on Antiretroviral Treatment in Ethiopia
Tassew, W. C., Zeleke, A. M., Ferede, Y. A., Abebe, M. T., & Assefa, G. W. (2025) · Journal of the International Association of Providers of AIDS Care (JIAPAC) · doi:10.1177/23259582251398934 · Cited by 1 · see citing works
Challenges for hepatitis C in Mexico: a public health perspective towards 2030
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Factores relacionados con el insuficiente control de la infección por el VIH en la Cohorte Española VACH
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FACTORS INFLUENCING HIV/AIDS CLIENT SATISFACTION AT COMPREHENSIVE CARE CENTRES IN WAJIR COUNTY, KENYA
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Faculty Opinions recommendation of HIV Testing and Treatment with the Use of a Community Health Approach in Rural Africa.
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Review of the RMNCAH Referral Pathway in Rural and Urban Settings in Uganda
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Authors: Roy, M., Czaicki, N., Holmes, C., Chavan, S., Tsitsi, A., Odeny, T., Sikazwe, I., Padian, N., & Geng, E.
Affiliations: University of California, San Francisco (US)
University of California, Berkeley (US)
Centre for Infectious Disease Research in Zambia (ZM)
University of Washington (US)
Corresponding author: Roy, Monika
ORCID: Roy, Monika
Holmes, Charles
Chavan, Saurabh
Odeny, Thomas
Sikazwe, Izukanji
Padian, Nancy
Geng, Elvin
Venue: Current HIV/AIDS Reports
Publisher: Springer Science and Business Media LLC
Published: 2016-05-17
Volume: 13
Issue: 3
Pages: 177-185
ISSN: 1548-3568 (ISSN-L)
1548-3576
DOI: 10.1007/s11904-016-0317-9
OpenAlex: W2407936191
Cited by: 35
References: 63
Citations by year: 2026: 3 · 2025: 1 · 2024: 2 · 2023: 2 · 2022: 3 · 2021: 5 · 2020: 4 · 2019: 7 · 2018: 2 · 2017: 6
FWCI: 0.77
Type: journal article
Language: en
Open access: closed
Licence: www.springer.com/tdm (tdm)
Locations: Current HIV/AIDS Reports (publishedVersion)
PubMed (publishedVersion)
Funders: National Institute of Allergy and Infectious Diseases (T32AI007641)
Topics: Health Sciences › Medicine › Infectious Diseases › HIV/AIDS Research and Interventions
Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › HIV/AIDS Impact and Responses
Health Sciences › Medicine › Epidemiology › HIV, Drug Use, Sexual Risk
Keywords: HIV/AIDS treatment, patient activation, social normalization, social capital, barriers to retention, sub-Saharan Africa, chronic disease management
MeSH terms: Appointments and Schedules, Health Services Accessibility, Humans, Health Knowledge, Attitudes, Practice, Patient Dropouts, Patient Participation, Policy Making, HIV Infections, Treatment Outcome, Africa South of the Sahara, Anti-HIV Agents

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

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