“I want to be around for her so I got to do it, I don’t have a choice”: Exploring the role of motherhood in healthcare engagement for women living with HIV in the United States Open Access

Ellison, Celeste (Spring 2021)

Permanent URL: https://etd.library.emory.edu/concern/etds/w0892c08s?locale=en


Objective: Women are a key population affected by the HIV epidemic. Many women living with HIV are mothers who are faced with managing their healthcare and wellness needs along with those of their children and other family members. The purpose of this study is to explore challenges and facilitators to health and healthcare engagement for mothers living with HIV in the United States.


Methods: This study was a secondary analysis of 76 qualitative interviews conducted with women who participated in the Women’s Adherence and Visit Engagement (WAVE) study, a sub-study embedded within The Women’s Interagency HIV Study (WIHS). The data excerpts used in this analysis were originally coded using the sub-codes motherhood, social support, and adherence/medication. Thematic analysis of the interview excerpts was conducted to identify sub-themes that emerged from the originally coded data.


Results: Of the 76 women who participated in the study, the majority of the women identified as Black (N=46), and 52 women (68%) reported having 1 or more children. Commonly discussed facilitators of engagement in HIV care were: children as sources of strength and motivation, children as logistical support (appointment and medication reminders), and support from fellow mothers and parents living with HIV. The women discussed how children and HIV community support increased their healthcare utilization, improved medication adherence, and led to the prioritization of their health, not only for themselves but for the sake of their children. HIV-stigma and family-related stress and responsibilities emerged as challenges faced by the mothers participating in the study. Several participants reflected on the physical and emotional challenges of balancing motherhood responsibilities and an HIV diagnosis.


Conclusion: These findings highlight the various ways in which motherhood and its complex and unique characteristics impact engagement in health and healthcare for women living with HIV. Future public health practice models and interventions should consider the intersectional nature of motherhood among women living with HIV, include parent-child support groups, and mandate HIV-stigma training for clinical providers, to better inform the development and improvement of comprehensive and appropriate interventions, programs, and clinical practice guidelines for mothers living with HIV. 


Table of Contents

Chapter 1: Review of the Literature 1

HIV in the United States 1

Women living with HIV 1

Mothers living with HIV 2

Facilitators to healthcare engagement 3

Motherhood as a motivator 3

Family and social support 4

Barriers to healthcare engagement 5

HIV-related stigma  5

Stress and family-related responsibilities 6

Disclosure 7

Intersectionality 9

Study Relevance 10

Chapter 2: Manuscript 11

Contribution of the student 12

Abstract 13

Introduction 14

Methods 19

Study Design 19

Participant Characteristics and Settings 19

Data Collection 20

Data Management and Analysis 20

Ethics 21

Results 22

Theme 1: Facilitators to engagement in health and healthcare 22

1.1 Children as motivators and sources of strength 22

1.2 Children as logistical support 26

1.3 Support from fellow mothers and parents living with HIV 29

Theme 2: Healthcare engagement challenges 30

2.1 Stigma 30

2.2 Family-related responsibilities and stress 31

Discussion 34

Chapter 3: Conclusion and public health recommendations 39

References 42

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