Factors associated with internalized HIV-related stigma among biological mothers living with HIV enrolled in a US cohort study

ABSTRACT

Understanding factors associated with internalized HIV-related stigma among mothers living with HIV may improve health outcomes. We examined factors (age, race/ethnicity, education, income, employment, marital status, health limitations, and years since HIV diagnosis) associated with internalized HIV-related stigma among biological mothers of children enrolled in the Surveillance Monitoring for ART Toxicities study of the US-based Pediatric HIV/AIDS Cohort Study. Stigma was measured with the Internalized HIV Stigma Scale (IHSS), completed biennially at their child’s 11–17-year visits. Linear regression models were fit with generalized estimating equations to evaluate the association between the factors of interest and internalized HIV-related stigma using all completed IHSS surveys. Among 438 eligible mothers, the mean IHSS score was 43.7 (SD = 19.5). Higher IHSS scores were observed for widowed women compared to married women, with an estimated mean difference of 8.91 (95% CI: 2.25, 15.57) after adjusting for age, education, income, and health limitations. Years since HIV diagnosis was associated with internalized HIV-related stigma. For every year of increase since HIV diagnosis, IHSS scores decreased by 0.54 per year, after adjusting for age (95% CI: −0.92, −0.17). Interventions to reduce internalized HIV-related stigma should target mothers who are widowed and those with a more recent HIV diagnosis.

KEYWORDS:

• PHACS
• SMARTT
• HIV
• stigma
• mothers

Acknowledgments

We thank the participants and families for their participation in PHACS, and the individuals and institutions involved in the conduct of PHACS. The study was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), Office of the Director, National Institutes of Health (OD), National Institute of Dental & Craniofacial Research (NIDCR), National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Mental Health (NIMH), National Institute on Drug Abuse (NIDA), National Cancer Institute (NCI), National Institute on Alcohol Abuse and Alcoholism (NIAAA), and National Heart, Lung, and Blood Institute (NHLBI) through cooperative agreements with the Harvard T.H. Chan School of Public Health (HD052102) (Principal Investigator: George R Seage III; Program Director: Liz Salomon) and the Tulane University School of Medicine (HD052104) (Principal Investigator: Russell Van Dyke; Co-Principal Investigator: Ellen Chadwick; Project Director: Patrick Davis), and through Harvard T.H. Chan School of Public Health for the Pediatric HIV/AIDS Cohort Study 2020 (P01HD103133) (Multiple Principal Investigators: Ellen Chadwick, Sonia Hernandez-Diaz, Jennifer Jao, Paige Williams; Program Director: Liz Salomon). Data management services were provided by Frontier Science (Data Management Center Director: Suzanne Siminski), and regulatory services and logistical support were provided by Westat, Inc (Project Directors: Julie Davidson, Tracy Wolbach).

The following institutions, clinical site investigators and staff participated in conducting PHACS SMARTT in 2020, in alphabetical order: Ann & Robert H. Lurie Children’s Hospital of Chicago: Ellen Chadwick, Margaret Ann Sanders, Kathleen Malee; Baylor College of Medicine: Mary Paul, Ruth Eser-Jose, Chivon McMullen-Jackson, Lynnette Harris; BronxCare Health System: Murli Purswani, Mahoobullah Mirza Baig, Alma Villegas, Marvin Alvarado; Children's Diagnostic & Treatment Center: Lisa-Gaye Robinson, Jawara Dia Cooley, James Blood, Patricia Garvie; New York University School of Medicine: William Borkowsky, Nagamah Sandra Deygoo, Jennifer Lewis; Rutgers – New Jersey Medical School: Arry Dieudonne, Linda Bettica, Juliette Johnson, Karen Surowiec; St. Jude Children's Research Hospital: Katherine Knapp, Jamie Russell-Bell, Megan Wilkins, Stephanie Love; San Juan Hospital Research Unit/Department of Pediatrics, San Juan Puerto Rico: Nicolas Rosario, Lourdes Angeli-Nieves, Vivian Olivera; SUNY Downstate Medical Center: Stephan Kohlhoff, Ava Dennie, Jean Kaye, Jenny Wallier; Tulane University School of Medicine: Karen Craig, Margarita Silio, Patricia Sirois; University of Alabama, Birmingham: Cecelia Hutto, Paige Hickman, Julie Huldtquist, Dan Marullo; University of California, San Diego: Stephen A. Spector, Veronica Figueroa, Megan Loughran, Sharon Nichols; University of Colorado, Denver: Elizabeth McFarland, Christine Kwon, Carrie Glenny, Jennifer Englund; University of Florida, Center for HIV/AIDS Research, Education and Service: Mobeen Rathore, Saniyyah Mahmoudi, Sarah El-Hassan, Jamilah Tejan; University of Illinois, Chicago: Karen Hayani, Lourdes Richardson, Renee Smith, Alina Miller; University of Miami: Gwendolyn Scott, Gustavo Gil Garcia, Gabriel Fernandez, Anai Cuadra; Keck Medicine of the University of Southern California: Toni Frederick, Mariam Davtyan, Guadalupe Morales-Avendano; University of Puerto Rico School of Medicine, Medical Science Campus: Zoe M. Rodriguez, Lizmarie Torres, Nydia Scalley

Note: The conclusions and opinions expressed in this article are those of the authors and do not necessarily reflect those of the National Institutes of Health or U.S. Department of Health and Human Services.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The Pediatric HIV/AIDS Cohort Study (PHACS) network was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), Office of The Director, National Institutes of Health (OD), National Institute of Dental & Craniofacial Research (NIDCR), National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Mental Health (NIMH), National Institute on Drug Abuse (NIDA), National Cancer Institute (NCI), National Institute on Alcohol Abuse and Alcoholism (NIAAA), and the National Heart, Lung, and Blood Institute (NHLBI) through cooperative agreements with the Harvard T.H. Chan School of Public Health (HD052102), Tulane University School of Medicine (HD052104), and Harvard T.H. Chan School of Public Health for the Pediatric HIV/AIDS Cohort Study 2020 network (P01HD103133).

Note: The conclusions and opinions expressed in this article are those of the authors and do not necessarily reflect those of the National Institutes of Health or U.S. Department of Health and Human Services.