The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States
Abstract Introduction Decisions to disclose HIV serostatus may be complicated by internalised HIV stigma. We evaluated the association of internalised HIV stigma in biological mothers living with HIV with disclosure of their serostatus to their children perinatally HIV‐exposed but uninfected (CHEU)....
| Main Authors: | , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-10-01
|
| Series: | Journal of the International AIDS Society |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/jia2.26167 |
| _version_ | 1797627707228422144 |
|---|---|
| author | Mariam Davtyan Deborah Kacanek Jessica Lee Claire Berman Ellen G. Chadwick Renee Smith Liz Salomon Toinette Frederick for the Pediatric HIV/AIDS Cohort Study |
| author_facet | Mariam Davtyan Deborah Kacanek Jessica Lee Claire Berman Ellen G. Chadwick Renee Smith Liz Salomon Toinette Frederick for the Pediatric HIV/AIDS Cohort Study |
| author_sort | Mariam Davtyan |
| collection | DOAJ |
| description | Abstract Introduction Decisions to disclose HIV serostatus may be complicated by internalised HIV stigma. We evaluated the association of internalised HIV stigma in biological mothers living with HIV with disclosure of their serostatus to their children perinatally HIV‐exposed but uninfected (CHEU). Methods Mothers and their CHEU were enrolled in the United States (U.S.)‐based Surveillance Monitoring for Antiretroviral Therapy (ART) Toxicities (SMARTT) study of the Pediatric HIV/AIDS Cohort Study (PHACS), a longitudinal study of outcomes related to in utero exposure to HIV and ART among CHEU. Mothers completing at least one stigma and disclosure assessment starting at the child's age 11‐, 13‐, 15‐ and/or 17‐year study visits between 16 August 2016 and 1 October 2020 were eligible. Stigma was measured with the 28‐item Internalised HIV Stigma Scale (IHSS). Mean stigma scores were linearly transformed to a range of 0–100, with higher scores indicating greater levels of stigma. At each visit, mothers were asked if their child was aware of their HIV diagnosis and at what age the child became aware. The Kaplan‐Meier estimator evaluated the cumulative probability of disclosure at each child age. Logistic regression models with generalised estimating equations to account for repeated measures were fit to examine the association between stigma and disclosure, controlling for relevant socio‐demographic variables. Results Included were 438 mothers of 576 children (mean age 41.5 years, 60% U.S.‐born, 60% Black/African American and 37% with household income ≤$10,000). The prevalence of disclosure across all visits was 29%. Mothers whose children were aware versus not aware of their serostatus reported lower mean IHSS scores (38.2 vs. 45.6, respectively). The cumulative proportion of disclosure by age 11 was 18.4% (95% CI: 15.5%, 21.8%) and 41% by age 17 (95% CI: 35.2%, 47.4%). At all child ages, disclosure was higher among children of U.S.‐born versus non‐U.S.‐born mothers. After adjusting for age, marital status and years since HIV diagnosis, higher IHSS scores were associated with lower odds of disclosure (OR = 0.985, 95% CI: 0.975, 0.995). Conclusions Providing support to women as they make decisions about serostatus disclosure to their children may entail addressing internalised HIV stigma and consideration of community‐level factors, particularly for non‐U.S.‐born mothers. |
| first_indexed | 2024-03-11T10:28:12Z |
| format | Article |
| id | doaj.art-f960730c431948429d8fe5b58811915c |
| institution | Directory Open Access Journal |
| issn | 1758-2652 |
| language | English |
| last_indexed | 2024-03-11T10:28:12Z |
| publishDate | 2023-10-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the International AIDS Society |
| spelling | doaj.art-f960730c431948429d8fe5b58811915c2023-11-15T08:56:05ZengWileyJournal of the International AIDS Society1758-26522023-10-0126S4n/an/a10.1002/jia2.26167The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United StatesMariam Davtyan0Deborah Kacanek1Jessica Lee2Claire Berman3Ellen G. Chadwick4Renee Smith5Liz Salomon6Toinette Frederick7for the Pediatric HIV/AIDS Cohort StudyDepartment of Pediatrics Keck School of Medicine University of Southern California Los Angeles California USAHarvard T.H. Chan School of Public Health Center for Biostatistics in AIDS Research Boston Massachusetts USAHarvard T.H. Chan School of Public Health Center for Biostatistics in AIDS Research Boston Massachusetts USADepartment of Epidemiology Harvard T.H. Chan School of Public Health Boston Massachusetts USADepartment of Pediatrics Feinberg School of Medicine Northwestern University Chicago Illinois USADepartment of Pediatrics College of Medicine University of Illinois Chicago Illinois USADepartment of Epidemiology Harvard T.H. Chan School of Public Health Boston Massachusetts USADepartment of Pediatrics Keck School of Medicine University of Southern California Los Angeles California USAAbstract Introduction Decisions to disclose HIV serostatus may be complicated by internalised HIV stigma. We evaluated the association of internalised HIV stigma in biological mothers living with HIV with disclosure of their serostatus to their children perinatally HIV‐exposed but uninfected (CHEU). Methods Mothers and their CHEU were enrolled in the United States (U.S.)‐based Surveillance Monitoring for Antiretroviral Therapy (ART) Toxicities (SMARTT) study of the Pediatric HIV/AIDS Cohort Study (PHACS), a longitudinal study of outcomes related to in utero exposure to HIV and ART among CHEU. Mothers completing at least one stigma and disclosure assessment starting at the child's age 11‐, 13‐, 15‐ and/or 17‐year study visits between 16 August 2016 and 1 October 2020 were eligible. Stigma was measured with the 28‐item Internalised HIV Stigma Scale (IHSS). Mean stigma scores were linearly transformed to a range of 0–100, with higher scores indicating greater levels of stigma. At each visit, mothers were asked if their child was aware of their HIV diagnosis and at what age the child became aware. The Kaplan‐Meier estimator evaluated the cumulative probability of disclosure at each child age. Logistic regression models with generalised estimating equations to account for repeated measures were fit to examine the association between stigma and disclosure, controlling for relevant socio‐demographic variables. Results Included were 438 mothers of 576 children (mean age 41.5 years, 60% U.S.‐born, 60% Black/African American and 37% with household income ≤$10,000). The prevalence of disclosure across all visits was 29%. Mothers whose children were aware versus not aware of their serostatus reported lower mean IHSS scores (38.2 vs. 45.6, respectively). The cumulative proportion of disclosure by age 11 was 18.4% (95% CI: 15.5%, 21.8%) and 41% by age 17 (95% CI: 35.2%, 47.4%). At all child ages, disclosure was higher among children of U.S.‐born versus non‐U.S.‐born mothers. After adjusting for age, marital status and years since HIV diagnosis, higher IHSS scores were associated with lower odds of disclosure (OR = 0.985, 95% CI: 0.975, 0.995). Conclusions Providing support to women as they make decisions about serostatus disclosure to their children may entail addressing internalised HIV stigma and consideration of community‐level factors, particularly for non‐U.S.‐born mothers.https://doi.org/10.1002/jia2.26167internalised HIV stigmaPHACSSMARTTmaternal HIV disclosureparental HIV disclosureperinatal HIV exposure |
| spellingShingle | Mariam Davtyan Deborah Kacanek Jessica Lee Claire Berman Ellen G. Chadwick Renee Smith Liz Salomon Toinette Frederick for the Pediatric HIV/AIDS Cohort Study The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States Journal of the International AIDS Society internalised HIV stigma PHACS SMARTT maternal HIV disclosure parental HIV disclosure perinatal HIV exposure |
| title | The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States |
| title_full | The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States |
| title_fullStr | The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States |
| title_full_unstemmed | The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States |
| title_short | The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV‐exposed but uninfected: a prospective study in the United States |
| title_sort | role of internalised hiv stigma in disclosure of maternal hiv serostatus to children perinatally hiv exposed but uninfected a prospective study in the united states |
| topic | internalised HIV stigma PHACS SMARTT maternal HIV disclosure parental HIV disclosure perinatal HIV exposure |
| url | https://doi.org/10.1002/jia2.26167 |
| work_keys_str_mv | AT mariamdavtyan theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT deborahkacanek theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT jessicalee theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT claireberman theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT ellengchadwick theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT reneesmith theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT lizsalomon theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT toinettefrederick theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT forthepediatrichivaidscohortstudy theroleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT mariamdavtyan roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT deborahkacanek roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT jessicalee roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT claireberman roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT ellengchadwick roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT reneesmith roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT lizsalomon roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT toinettefrederick roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates AT forthepediatrichivaidscohortstudy roleofinternalisedhivstigmaindisclosureofmaternalhivserostatustochildrenperinatallyhivexposedbutuninfectedaprospectivestudyintheunitedstates |