HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya
Introduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 careg...
| Main Authors: | , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2023-04-01
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| Series: | Journal of the International Association of Providers of AIDS Care |
| Online Access: | https://doi.org/10.1177/23259582231170732 |
| _version_ | 1797838540703268864 |
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| author | Emma Gillette MPH Violet Naanyu PhD Winstone Nyandiko MBChB, MMED, MPH Ashley Chory MPH Michael Scanlon MPH, MS Josephine Aluoch BSc, MS Hillary Koros MSc Celestine Ashimosi BSc Whitney Beigon Counseling Psychology Dennis Munyoro Health Records Janet Lidweye BSc Jack Nyagaya Counseling Psychology Allison DeLong MS Rami Kantor MD Rachel Vreeman MD, MS |
| author_facet | Emma Gillette MPH Violet Naanyu PhD Winstone Nyandiko MBChB, MMED, MPH Ashley Chory MPH Michael Scanlon MPH, MS Josephine Aluoch BSc, MS Hillary Koros MSc Celestine Ashimosi BSc Whitney Beigon Counseling Psychology Dennis Munyoro Health Records Janet Lidweye BSc Jack Nyagaya Counseling Psychology Allison DeLong MS Rami Kantor MD Rachel Vreeman MD, MS |
| author_sort | Emma Gillette MPH |
| collection | DOAJ |
| description | Introduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. Results: All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Conclusion: Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols. |
| first_indexed | 2024-04-09T15:42:30Z |
| format | Article |
| id | doaj.art-e6c901c4432f42e8aabd102b60311c58 |
| institution | Directory Open Access Journal |
| issn | 2325-9582 |
| language | English |
| last_indexed | 2024-04-09T15:42:30Z |
| publishDate | 2023-04-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of the International Association of Providers of AIDS Care |
| spelling | doaj.art-e6c901c4432f42e8aabd102b60311c582023-04-27T07:33:43ZengSAGE PublishingJournal of the International Association of Providers of AIDS Care2325-95822023-04-012210.1177/23259582231170732HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in KenyaEmma Gillette MPH0Violet Naanyu PhD1Winstone Nyandiko MBChB, MMED, MPH2Ashley Chory MPH3Michael Scanlon MPH, MS4Josephine Aluoch BSc, MS5Hillary Koros MSc6Celestine Ashimosi BSc7Whitney Beigon Counseling Psychology8Dennis Munyoro Health Records9Janet Lidweye BSc10Jack Nyagaya Counseling Psychology11Allison DeLong MS12Rami Kantor MD13Rachel Vreeman MD, MS14 Department of Health Systems Design and Global Health, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA , Eldoret, Kenya , Eldoret, Kenya Department of Health Systems Design and Global Health, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA Center for Global Health, Indiana University, Indianapolis, IN, USA , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya , Eldoret, Kenya Alpert Medical School, Brown University, Providence, RI, USA Alpert Medical School, Brown University, Providence, RI, USA , Eldoret, KenyaIntroduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. Results: All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Conclusion: Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.https://doi.org/10.1177/23259582231170732 |
| spellingShingle | Emma Gillette MPH Violet Naanyu PhD Winstone Nyandiko MBChB, MMED, MPH Ashley Chory MPH Michael Scanlon MPH, MS Josephine Aluoch BSc, MS Hillary Koros MSc Celestine Ashimosi BSc Whitney Beigon Counseling Psychology Dennis Munyoro Health Records Janet Lidweye BSc Jack Nyagaya Counseling Psychology Allison DeLong MS Rami Kantor MD Rachel Vreeman MD, MS HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya Journal of the International Association of Providers of AIDS Care |
| title | HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya |
| title_full | HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya |
| title_fullStr | HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya |
| title_full_unstemmed | HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya |
| title_short | HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya |
| title_sort | hiv related stigma shapes research participation for youth living with hiv in kenya |
| url | https://doi.org/10.1177/23259582231170732 |
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