Emma Gillette, Violet Naanyu, Winstone Nyandiko, Ashley Chory, Michael Scanlon, Josephine Aluoch, Hillary Koros, Celestine Ashimosi, Whitney Beigon, Dennis Munyoro, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman
{"title":"艾滋病毒相关的耻辱影响了肯尼亚青年艾滋病毒感染者的研究参与。","authors":"Emma Gillette, Violet Naanyu, Winstone Nyandiko, Ashley Chory, Michael Scanlon, Josephine Aluoch, Hillary Koros, Celestine Ashimosi, Whitney Beigon, Dennis Munyoro, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman","doi":"10.1177/23259582231170732","DOIUrl":null,"url":null,"abstract":"<p><p><b>Introduction:</b> 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. <b>Methods:</b> 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. <b>Results:</b> 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. <b>Conclusion:</b> Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.</p>","PeriodicalId":17328,"journal":{"name":"Journal of the International Association of Providers of AIDS Care","volume":"22 ","pages":"23259582231170732"},"PeriodicalIF":2.2000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/76/4c/10.1177_23259582231170732.PMC10141251.pdf","citationCount":"1","resultStr":"{\"title\":\"HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya.\",\"authors\":\"Emma Gillette, Violet Naanyu, Winstone Nyandiko, Ashley Chory, Michael Scanlon, Josephine Aluoch, Hillary Koros, Celestine Ashimosi, Whitney Beigon, Dennis Munyoro, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman\",\"doi\":\"10.1177/23259582231170732\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Introduction:</b> 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. <b>Methods:</b> 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. <b>Results:</b> 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. <b>Conclusion:</b> Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.</p>\",\"PeriodicalId\":17328,\"journal\":{\"name\":\"Journal of the International Association of Providers of AIDS Care\",\"volume\":\"22 \",\"pages\":\"23259582231170732\"},\"PeriodicalIF\":2.2000,\"publicationDate\":\"2023-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/76/4c/10.1177_23259582231170732.PMC10141251.pdf\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of the International Association of Providers of AIDS Care\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/23259582231170732\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"INFECTIOUS DISEASES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of the International Association of Providers of AIDS Care","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23259582231170732","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"INFECTIOUS DISEASES","Score":null,"Total":0}
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 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.