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Patient Health Literacy and Communication with Providers Among Women Living with HIV: A Mixed Methods Study

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Abstract

In this mixed-methods study, we examine the relationship between provider communication and patient health literacy on HIV continuum of care outcomes among women living with HIV in the United States. We thematically coded qualitative data from focus groups and interviews (N = 92) and conducted mediation analyses with quantitative survey data (N = 1455) collected from Women’s Interagency HIV Study participants. Four qualitative themes related to provider communication emerged: importance of respect and non-verbal cues; providers’ expressions of condescension and judgement; patient health literacy; and unclear, insufficient provider communication resulting in diminished trust. Quantitative mediation analyses suggest that higher health literacy is associated with higher perceived patient–provider interaction quality, which in turn is associated with higher levels of trust in HIV providers, improved antiretroviral medication adherence, and reduced missed clinical visits. Findings indicate that enhancing provider communication and bolstering patient health literacy could have a positive impact on the HIV continuum of care.

Resumen

En este estudio de métodos mixtos, examinamos la relación entre la comunicación del proveedor y la alfabetización sanitaria del paciente sobre los resultados de la atención continua del VIH entre las mujeres que viven con el VIH en los Estados Unidos. Codificamos temáticamente datos cualitativos de grupos focales y entrevistas (N = 92) y realizamos análisis de mediación con datos de encuestas cuantitativas (N = 1455) recopilados de participantes del Estudio de VIH entre agencias de mujeres. Surgieron cuatro temas cualitativos relacionados con la comunicación con el proveedor: la importancia del respeto y las señales no verbales; las expresiones de condescendencia y juicio de los proveedores; alfabetización en salud del paciente; y una comunicación poco clara e insuficiente con el proveedor que da como resultado una disminución de la confianza. Los análisis de mediación cuantitativa sugieren que una mayor alfabetización en salud se asocia con una mayor calidad de interacción percibida entre el paciente y el proveedor, que a su vez se asocia con niveles más altos de confianza en los proveedores de VIH, una mejor adherencia a la medicación antirretroviral y una reducción de las visitas clínicas perdidas. Los resultados indican que mejorar la comunicación con los proveedores y reforzar la alfabetización sanitaria del paciente podría tener un impacto positivo en la atención continua del VIH.

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Acknowledgements

The contents of this publication are solely the responsibility of the authors and do not represent the official views of the National Institutes of Health (NIH). MWCCS (Principal Investigators): Atlanta CRS (Ighovwerha Ofotokun, Anandi Sheth, and Gina Wingood), U01-HL146241; Baltimore CRS (Todd Brown and Joseph Margolick), U01-HL146201; Bronx CRS (Kathryn Anastos and Anjali Sharma), U01-HL146204; Brooklyn CRS (Deborah Gustafson and Tracey Wilson), U01-HL146202; Data Analysis and Coordination Center (Gypsyamber D’Souza, Stephen Gange and Elizabeth Golub), U01-HL146193; Chicago-Cook County CRS (Mardge Cohen and Audrey French), U01-HL146245; Chicago-Northwestern CRS (Steven Wolinsky), U01-HL146240; Northern California CRS (Bradley Aouizerat, Jennifer Price, and Phyllis Tien), U01-HL146242; Los Angeles CRS (Roger Detels and Matthew Mimiaga), U01-HL146333; Metropolitan Washington CRS (Seble Kassaye and Daniel Merenstein), U01-HL146205; Miami CRS (Maria Alcaide, Margaret Fischl, and Deborah Jones), U01-HL146203; Pittsburgh CRS (Jeremy Martinson and Charles Rinaldo), U01-HL146208; UAB-MS CRS (Mirjam-Colette Kempf, Jodie Dionne-Odom, and Deborah Konkle-Parker), U01-HL146192; UNC CRS (Adaora Adimora), U01-HL146194. The MWCCS is funded primarily by the National Heart, Lung, and Blood Institute (NHLBI), with additional co-funding from the Eunice Kennedy Shriver National Institute Of Child Health & Human Development (NICHD), National Institute On Aging (NIA), 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 Of Mental Health (NIMH), National Institute On Drug Abuse (NIDA), National Institute Of Nursing Research (NINR), National Cancer Institute (NCI), National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institute on Minority Health and Health Disparities (NIMHD), and in coordination and alignment with the research priorities of the National Institutes of Health, Office of AIDS Research (OAR). MWCCS data collection is also supported by UL1-TR000004 (UCSF CTSA), UL1-TR003098 (JHU ICTR), UL1-TR001881 (UCLA CTSI), P30-AI-050409 (Atlanta CFAR), P30-AI-073961 (Miami CFAR), P30-AI-050410 (UNC CFAR), P30-AI-027767 (UAB CFAR), and P30-MH-116867 (Miami CHARM). Manuscript development was supported by K01MH116737 (NIMH). The authors gratefully acknowledge the contributions of the study participants and dedication of the staff at the MWCCS sites.

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Author notes

  1. C. Ann Gakumo and Ibrahim Yigit have equal contribution.

Authors and Affiliations

  1. University of Alabama at Birmingham (UAB), Birmingham, AL, 35294, USA

    Henna Budhwani, Samantha Whitfield, Shericia Ross, Mirjam-Colette Kempf & Janet M. Turan

  2. University of Massachusetts Boston (UMB), Boston, MA, 02125, USA

    C. Ann Gakumo

  3. TED University, Ankara, Turkey

    Ibrahim Yigit

  4. Emory University, Atlanta, GA, 30322, USA

    Whitney S. Rice

  5. Baylor College of Medicine, Houston, TX, 77030, USA

    Faith E. Fletcher

  6. University of Mississippi Medical Center (UMMC), Jackson, MS, 39216, USA

    Deborah J. Konkle-Parker

  7. Stroger Hospital of Cook County, Chicago, IL, 60612, USA

    Mardge H. Cohen

  8. Columbia University, New York, NY, 10027, USA

    Gina M. Wingood & Lisa R. Metsch

  9. University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599, USA

    Adaora A. Adimora

  10. State University of New York, Downstate Health Sciences University, Brooklyn, NY, 11203, USA

    Tonya N. Taylor & Tracey E. Wilson

  11. University of California, San Francisco, San Francisco, CA, 94143, USA

    Sheri D. Weiser

  12. Montefiore Medical Center, New York, NY, 10467, USA

    Oluwakemi Sosanya

  13. Georgetown University, Washington, DC, 20007, USA

    Lakshmi Goparaju

  14. Johns Hopkins University, Baltimore, MD, 21287, USA

    Stephen Gange

  15. Koc University, Istanbul, Turkey

    Bulent Turan

Authors
  1. Henna Budhwani
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  2. C. Ann Gakumo
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Contributions

HB, YI, BT, and JMT provided intellectual framing to the development and revision of this manuscript. JT supported and guided the protocol development, analysis and manuscript development. CAG, WSR, and FEF collected and analyzed the qualitative data. IY lead the quantitative statistical analyses supported by senior-level guidance from BT. The additional authors facilitated access to study participants at their respective study sites and provided a critical review of the manuscript and contributed feedback. All named author(s) read and approved the final manuscript.

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Correspondence to Henna Budhwani.

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Budhwani, H., Gakumo, C.A., Yigit, I. et al. Patient Health Literacy and Communication with Providers Among Women Living with HIV: A Mixed Methods Study. AIDS Behav 26, 1422–1430 (2022). https://doi.org/10.1007/s10461-021-03496-2

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