‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research
Background HIV remains a major challenge in KwaZulu-Natal, South Africa, particularly for young women who face disproportionate risks and barriers to prevention and treatment. Most HIV cure trials, however, occur in high-income countries. Objective To examine the perspectives of young women diagnose...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Taylor & Francis Group
2025-12-01
|
| Series: | HIV Research & Clinical Practice |
| Subjects: | |
| Online Access: | http://dx.doi.org/10.1080/25787489.2025.2455917 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1832584748974735360 |
|---|---|
| author | Deli Mthimkhulu Krista L. Dong Mzwakhe Wiseman Ngcobo Deborah Mindry Ayanda Zulu Ntombifuthi Langa Luyanda Maphalala Vanessa Pillay Maud Mthembu Annie Miall Whitney Tran Ana Dillen Fang Wan Ali Ahmed Jamila K. Stockman Maryam Hussain Thumbi Ndung’u Karine Dubé |
| author_facet | Deli Mthimkhulu Krista L. Dong Mzwakhe Wiseman Ngcobo Deborah Mindry Ayanda Zulu Ntombifuthi Langa Luyanda Maphalala Vanessa Pillay Maud Mthembu Annie Miall Whitney Tran Ana Dillen Fang Wan Ali Ahmed Jamila K. Stockman Maryam Hussain Thumbi Ndung’u Karine Dubé |
| author_sort | Deli Mthimkhulu |
| collection | DOAJ |
| description | Background HIV remains a major challenge in KwaZulu-Natal, South Africa, particularly for young women who face disproportionate risks and barriers to prevention and treatment. Most HIV cure trials, however, occur in high-income countries. Objective To examine the perspectives of young women diagnosed with acute HIV in a longitudinal study, focusing on their perceptions on ATI-inclusive HIV cure trials and the barriers and facilitators to participation. Materials and Methods Between October 2022 and February 2024, we conducted closed-ended surveys and in-depth interviews with 20 women aged 19–33 living with HIV, who were willing but ineligible or unable to participate in an HIV cure trial. Results Many participants reported mental health challenges, including major depression (40%), moderate to severe anxiety (35%), and low self-esteem (35%). While women diagnosed during acute HIV supported pausing antiretroviral treatment (ART) during analytical treatment interruption (ATI) to advance HIV cure research, concerns about health risks and HIV-related stigma were significant barriers to enrollment. Trust in the research team and close monitoring were seen as positive factors, while fears around sharing of HIV/ATI status and transmission to sex partners complicated decision-making. Participants expressed a need for psychological counseling and access to community resources to manage ATI-related stressors. Conclusions Understanding women’s perspectives on HIV cure research, especially ATI trials, is vital. Building trust and addressing psychosocial challenges through a healing-centered approach can facilitate trial participation. Socio-behavioral research before and during HIV cure trials will be essential to inform participant-centered protocol design. |
| format | Article |
| id | doaj-art-bd48e8a8e49e4b3e88afcf6927dc478a |
| institution | Kabale University |
| issn | 2578-7470 |
| language | English |
| publishDate | 2025-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | HIV Research & Clinical Practice |
| spelling | doaj-art-bd48e8a8e49e4b3e88afcf6927dc478a2025-01-27T11:59:11ZengTaylor & Francis GroupHIV Research & Clinical Practice2578-74702025-12-0126110.1080/25787489.2025.24559172455917‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral researchDeli Mthimkhulu0Krista L. Dong1Mzwakhe Wiseman Ngcobo2Deborah Mindry3Ayanda Zulu4Ntombifuthi Langa5Luyanda Maphalala6Vanessa Pillay7Maud Mthembu8Annie Miall9Whitney Tran10Ana Dillen11Fang Wan12Ali Ahmed13Jamila K. Stockman14Maryam Hussain15Thumbi Ndung’u16Karine Dubé17Integration of TB in Education and Care for HIV/AIDS (ITEACH)Ragon Institute of Mass General, MIT and HarvardIntegration of TB in Education and Care for HIV/AIDS (ITEACH)Center for Gender and Health Justice, University of California Global Health InstituteIntegration of TB in Education and Care for HIV/AIDS (ITEACH)Integration of TB in Education and Care for HIV/AIDS (ITEACH)Females Rising through Education, Support and Health (FRESH)Females Rising through Education, Support and Health (FRESH)School of Applied Human Sciences, Department of Social Work, University of KwaZulu-Natal (UKZN)Ragon Institute of Mass General, MIT and HarvardDivision of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Department of Ecology and Evolutionary Biology, University of California Los Angeles (UCLA)Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Ragon Institute of Mass General, MIT and HarvardDivision of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD)Background HIV remains a major challenge in KwaZulu-Natal, South Africa, particularly for young women who face disproportionate risks and barriers to prevention and treatment. Most HIV cure trials, however, occur in high-income countries. Objective To examine the perspectives of young women diagnosed with acute HIV in a longitudinal study, focusing on their perceptions on ATI-inclusive HIV cure trials and the barriers and facilitators to participation. Materials and Methods Between October 2022 and February 2024, we conducted closed-ended surveys and in-depth interviews with 20 women aged 19–33 living with HIV, who were willing but ineligible or unable to participate in an HIV cure trial. Results Many participants reported mental health challenges, including major depression (40%), moderate to severe anxiety (35%), and low self-esteem (35%). While women diagnosed during acute HIV supported pausing antiretroviral treatment (ART) during analytical treatment interruption (ATI) to advance HIV cure research, concerns about health risks and HIV-related stigma were significant barriers to enrollment. Trust in the research team and close monitoring were seen as positive factors, while fears around sharing of HIV/ATI status and transmission to sex partners complicated decision-making. Participants expressed a need for psychological counseling and access to community resources to manage ATI-related stressors. Conclusions Understanding women’s perspectives on HIV cure research, especially ATI trials, is vital. Building trust and addressing psychosocial challenges through a healing-centered approach can facilitate trial participation. Socio-behavioral research before and during HIV cure trials will be essential to inform participant-centered protocol design.http://dx.doi.org/10.1080/25787489.2025.2455917women living with hivhiv cure researchhiv preventionhiv treatmentsocio-behavioral sciencessouth africa |
| spellingShingle | Deli Mthimkhulu Krista L. Dong Mzwakhe Wiseman Ngcobo Deborah Mindry Ayanda Zulu Ntombifuthi Langa Luyanda Maphalala Vanessa Pillay Maud Mthembu Annie Miall Whitney Tran Ana Dillen Fang Wan Ali Ahmed Jamila K. Stockman Maryam Hussain Thumbi Ndung’u Karine Dubé ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research HIV Research & Clinical Practice women living with hiv hiv cure research hiv prevention hiv treatment socio-behavioral sciences south africa |
| title | ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research |
| title_full | ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research |
| title_fullStr | ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research |
| title_full_unstemmed | ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research |
| title_short | ‘It is scary to pause treatment’: perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa: Socio-Behavioral research |
| title_sort | it is scary to pause treatment perspectives on hiv cure related research and analytical treatment interruptions from women diagnosed during acute hiv in durban south africa socio behavioral research |
| topic | women living with hiv hiv cure research hiv prevention hiv treatment socio-behavioral sciences south africa |
| url | http://dx.doi.org/10.1080/25787489.2025.2455917 |
| work_keys_str_mv | AT delimthimkhulu itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT kristaldong itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT mzwakhewisemanngcobo itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT deborahmindry itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT ayandazulu itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT ntombifuthilanga itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT luyandamaphalala itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT vanessapillay itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT maudmthembu itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT anniemiall itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT whitneytran itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT anadillen itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT fangwan itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT aliahmed itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT jamilakstockman itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT maryamhussain itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT thumbindungu itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch AT karinedube itisscarytopausetreatmentperspectivesonhivcurerelatedresearchandanalyticaltreatmentinterruptionsfromwomendiagnosedduringacutehivindurbansouthafricasociobehavioralresearch |