Exploring the Role of Motherhood in Healthcare Engagement for Women living with HIV in the USA

Abstract

Mothers living with HIV are faced with managing their own complex healthcare and wellness needs while caring for their children. Understanding the lived experiences of mothers living with HIV, including grandmothers and mothers with older children - who are less explicitly represented in existing literature, may guide the development of interventions that best support them and their families. This study sought to explore the role of motherhood and related social/structural factors on engagement with HIV care, treatment-seeking behaviours, and overall HIV management among mothers living with HIV in the USA to inform such efforts. Semi-structured interviews were conducted between June and December 2015 with 52 mothers living with HIV, recruited from Women’s Interagency HIV Study (WIHS) sites in four US cities. Five broad themes were identified from the interviews: children as a motivation for optimal HIV management; children as providing logistical support for HIV care and treatment; the importance of social support for mothers; stressors tied to responsibilities of motherhood; and stigma about being a mother living with HIV. Findings underscore the importance of considering the demands of motherhood when developing more effective strategies to support mothers in managing HIV and promoting the overall health and well-being of their families.

Introduction

Women living with HIV face social and structural inequalities (e.g. insufficient access to high-quality healthcare, gendered discrimination, and HIV-related stigma) that hinder HIV management and overall health and can be compounded by motherhood responsibilities (Geter, Herron and Sutton 2018; Turan et al. 2017). A significant proportion of women living with HIV in the USA are childbearing age (15 to 44 years), with approximately 5,000 women living with HIV giving birth annually (Nesheim et al. 2018). Prenatal HIV testing, preconception and perinatal counselling and management, and antiretroviral therapy (ART) have made pregnancy safer for women living with HIV and their families compared to earlier years of the HIV epidemic, increasing live-birth rates among women living with HIV to those similar to HIV-negative women (Haddad et al. 2017; Irshad, Mahdy and Tonismae 2023; Salters et al. 2017). Subsequently, prioritising children’s needs and care can affect the capacity for mothers living with HIV to manage their condition, in both health challenging and promoting ways.

Women living with HIV report that the distinctive constellation of priorities and concerns related to their motherhood and HIV statuses affect their health and social wellbeing. Women living with HIV may delay or not receive treatment, citing busy parenting schedules - especially in households with multiple children, thereby contributing to increased stress levels (Davies, Thind and Stiller 2013; Boehme et al. 2014). Amidst HIV-related and intersecting reproductive stigma, in which women living with HIV anticipate and experience judgment for getting pregnant or putting children ‘at risk’, some women living with HIV conceal their HIV status and avoid being seen at HIV clinics for appointments, safeguarding their families from stigma’s effects (McDonald 2013; Rice et al. 2019; Payán et al. 2019; Webel and Higgins 2012). These competing priorities and forms of stigma management can exacerbate social isolation and delay HIV care management (Boehme et al. 2014; Walcott et al. 2016; Huertas-Zurriaga et al. 2021). HIV status can also affect family engagement– such as instances in which women living with HIV report missed school ceremonies, sports and extracurricular activities due to initial diagnosis, hospitalisations, medication side effects and fatigue, affecting mothers’ mental health (Murphy et al. 2011).

In contrast, women living with HIV report that the prospect of motherhood as well as the social support that they may gain through this role has benefits to their health and social wellbeing. The desire to have a healthy baby is a motivator for starting and adhering to ART among women living with HIV (Fletcher et al. 2016). Children and support groups for mothers living with HIV can facilitate HIV self-management in several ways (Boehme et al. 2014; Liamputtong 2013). Older children play a supportive role in their mother’s HIV care by helping manage healthcare logistics, including through medication reminders, appointment scheduling, and transport (Edwards et al. 2012). Family and HIV-related support groups offer emotional and technical support, advice, reduced chore burden, and resources, improving the quality of life and healthcare management for mothers living with HIV (Boehme et al. 2014; Edwards et al. 2012).

As more women living with HIV become mothers, there is a need to understand the lived experiences of mothers living with HIV and develop programmes that can circumvent challenges at the intersection of HIV and motherhood statuses. Such programmes can leverage the health promoting opportunities at this intersection. Interventions for mothers living with HIV have focused on building capacity for HIV status disclosure to children, enhancing parenting skills (e.g. engagement, positive reinforcement, self-efficacy) and self-care skills (e.g. health self-monitoring, social support acquisition), and improving psychosocial outcomes (i.e. coping, HIV-related stigma) and HIV care continuum outcomes (i.e. linkage to and continued use of HIV care), with mixed evidence of success and limited representation in the USA. (Armistead et al. 2022; Murphy et al. 2017; Schmitz et al. 2019). The current study seeks to improve our understanding of the facilitators and challenges to HIV care engagement and well-being for mothers living with HIV to inform intervention development in US settings.

Materials and Methods

Study Design

This paper derives from the Women’s Interagency HIV Study (WIHS), a longitudinal prospective cohort study which explored the impact of HIV progression, treatment use, and outcomes on women in the USA (Adimora et al. 2018), since merged with the Multicenter AIDS Cohort Study (MACS) to become the MACS/WIHS Combined Cohort Study (MWCCS) - including men. Data were collected in the Women’s Adherence and Visit Engagement (WAVE) sub-study to WIHS, focused on the effects of intersectional stigma on HIV treatment and outcomes among women living with HIV (Rice et al. 2018). The present analysis specifically examines facilitators and challenges to HIV care engagement and related health and social wellbeing outcomes for mothers living with HIV, to inform intervention and programme development.

Participants and Recruitment

Study participants were recruited from WIHS site locations in Birmingham, Alabama (University of Alabama at Birmingham [UAB]); Jackson, Mississippi (University of Mississippi Medical Center [UMMC]); Atlanta, Georgia (Emory University); and San Francisco, California (University of California, San Francisco [UCSF]). Participants were recruited during routine semi-annual WIHS visits, during which staff verbally provided study details and consent forms. Inclusion criteria required individuals to self-identify as mothers living with HIV, be ≥18 years old, proficient in English, and capable of giving consent. WIHS enrolment occurred in distinct waves (1994–1995, 2001–2002, 2011–2012, 2013). After initial screening, eligible participants underwent interviews, examinations, and specimen collection. The use of quota sampling ensured participant diversity with respect to race, ethnicity, and income level (Futri, Risfandy and Ibrahim 2022).

Procedure

Prior to data collection, the study was reviewed by Institutional Review Boards at the four WIHS site locations (UAB Protocol X141212007; UMMC File 2015–0007; Emory Protocol IRB00079360; UCSF Study 15–15795). All participants signed informed consent forms. Seven interviewers across sites who completed training in qualitative health inequity research best practices conducted in-person in-depth interviews in private rooms with 52 study participants from June to December 2015. The interviewers employed a semi-structured interview guide to facilitate conversations related to stigma, discrimination, and engagement in HIV treatment. This guide included questions aimed at encouraging participants to discuss their experiences with healthcare-related stigma, as follows: ‘What challenges do you encounter in attending your regular HIV care appointments? What supports you in adhering to your doctor’s recommended HIV medication regimen (correct timing and dosage)? What factors could potentially hinder you from following your doctor’s HIV medication instructions?’ The guide did not include queries about motherhood specifically, yet its significance emerged as a thematic focus through inductive interview analysis.

Analytic Procedure and Data Management

Interviews were recorded digitally, transcribed verbatim, de-identified, and analysed in Dedoose, a qualitative data management program (Dedoose Version 8.0.35, 2018). The analysis team, trained for coding proficiency and intercoder reliability, developed codes and sub-codes post-data collection.

To ensure consistency, reliability, and quality assurance, coding was iterative to allow for modifications and clarity across the research team. A priori codes such as race, gender and stigma/discrimination were informed by literature reviews and the semi-structured interview guide. Emergent codes such as age, image and motherhood were established during the iterative coding process. To ensure coding reliability, 12 transcripts were double-coded, and results were discussed among coders to establish a mutual understanding of coding procedures and definitions (Rice et al. 2018).

Thematic analyses, following Castleberry and Nolen (2018), identified overarching themes emerging from the data. Coders organised interview data in a table, visually representing thematic organisation. Final analysis included illustrative quotes by theme, presented in the results section alongside participant demographic descriptions.

Results

In total, 52 mothers living with HIV participated. Most mothers were African American (67%), heterosexual (90%), had some college/associate-level education (46%) and used ART (96%) (Table 1). Ages ranged from 31 to 62 years, with a mean age of 48. Women reported a from 1 to 10 total children, with an average of 3. Five themes were developed from interview findings (Table 2): (1) children as motivation for HIV management and long-term health; (2) children as logistical support for HIV care and treatment; (3) social support networks for mothers; (4) stressors tied to responsibilities of motherhood; and (5) stigma about being a mother with HIV.

Table 1.

Participant Demographic Characteristics

Characteristic	N (%)
Race/Ethnicity
African American	35 (67%)
White/Non-Hispanic	10 (19%)
Hispanic or Latina	3 (6%)
Native American/Non-Hispanic	1 (2%)
Other	3 (6%)
Education
Less than High School/GED	7 (13%)
High School/GED	13 (25%)
Some College/Associate	24 (46%)
College/Associate	6 (12%)
Graduate-Level Education	2 (4%)
Age	52
Mean (SD)	48 (9)
Number of Children
Mean (SD)	3 (2)
Sexual Orientation
Heterosexual	47 (90%)
Bisexual	1 (2%)
Lesbian	4 (8%)
Antiretroviral Therapy (ART) Use
Yes	50 (96%)
No	2 (4%)

Table 2.

Themes and sub-themes Related to Motherhood and HIV Management

Theme	Sub-Themes	Codes (Intersecting with Motherhood)
Children as motivation for HIV management and long-term health	HIV Self-Management to Ensure Child Health Present for Children’s Future	Adherence/Medication Concern for Health Facilitators
Children as logistical support for HIV care and treatment	Treatment Adherence Medical Appointment Reminders	Engagement Facilitators
Social support networks for mothers	Emotional Support Access to Resources	Social Support
Stressors tied to responsibilities of motherhood	Navigating Caregiving Responsibilities Amidst HIV Management	Distress Psychological
Stigma about being a mother with HIV	Reproductive-focused HIV stigma Disclosure-related Anxiety and Empowerment	Stigma_Discrimination Non/Disclosure Positive Emotional Coping

Children as motivation for HIV management and long-term health

Most participants said that their children provided motivation and strength, positively impacting their healthcare engagement, decision-making, and desire to live a long life.

HIV Self-Management to Ensure Child Health

Several women shared that, while pregnant, their future children served as motivators for maintaining their HIV treatment regimen throughout pregnancy. Some participants were initially fearful of transmitting HIV to their unborn children but followed their prescribed treatment to prevent HIV transmission, as reflected by the following quote:

… But the whole world came down when [the provider] said I had [HIV] and I thought I’m going to die; he’s going to die. And they’re like no, there’s plenty of medication. We can make sure that he doesn’t get it. And I said OK, so I tried it and I did it. I took the medicine every day, stopped doing drugs and all of that and now have a very healthy handsome little boy. (White/non-Hispanic Participant, 1 child, Jackson, MS)

While some participants found medication use challenging, their love and concern for their unborn child’s risk of HIV transmission motivated them to take their prescribed medications.

Yeah, the size [of the pill] really did kind of bug me at first but you know I was like for the love of my kid and for her not to get anything I was like, I will do it. I actually prayed when I first found out, that night when that lady gave me the news, I went straight home. I got on my knees, and I prayed. I said, ‘God, I don’t know what this is going to do to me.’ I am already scared because I don’t know what HIV is going to do to me, but I said, ‘God please… just let this baby come healthy.’ (African American/non-Hispanic Participant, 1 child, Atlanta, GA)

Present for Children’s Future

Many participants explained how they wanted to ensure that they lived to be around for their children long-term. Some participants described being self-motivated by this desire to take their medications as prescribed.

…my doctor said do you want to live, or do you want to die? You’ve got two beautiful kids. You have to make a choice. Even though I kind of slacked off this summer with my medicine, and I wasn’t taking it like I’m supposed to, I started back taking it every day like I’m supposed to… (African American/non-Hispanic Participant, 2 children, Atlanta, GA)

Several participants were grandmothers, and most cited their grandchildren as powerful motivators for taking necessary measures to maintain and improve their health, so that they could be there for their grandchildren.

Because I want to live. I have a lot to live for. I have five beautiful grandbabies and I need to be around for them. And not only for them, for myself, you know. (African American/non-Hispanic Participant, 4 children, Atlanta, GA)

When asked about their sources of strength, several participants mentioned that their children or grandchildren served as inspirations that compelled them to cope and triumph over challenges related to HIV.

I guess my son for one. I know because I know I’m living for him. I try to stay strong all the time. I will never want to let him see me depressed or down. He’ll never see me like that. So, I try not to let him see me like that so that what keep me motivated and keep me going. (African American/non-Hispanic Participant, 1 child, Birmingham, AL)

Children as logistical support for HIV care and treatment

Several participants highlighted how their older children played a key role in offering practical assistance for their HIV care and treatment, emphasising the importance of this support fot sustaining effective healthcare management.

Treatment Adherence

Several participants reflected upon the ways in which their older children bolstered their commitment to following their HIV care regimen:

They make sure that I take my medication… make sure that I eat… call me every day… make sure that I have my doctor’s appointments. They want to know what the doctor said and if I’m explaining things right or if I don’t remember. The next time, one of them will come with me so they will be able to explain to the other ones. It’s like I’m the child. (African American/non-Hispanic Participant, 4 children, Birmingham, AL)

Participants specifically talked about how their older children wanted to ensure they were using their HIV medication. Children use various methods to remind their mothers to do so.

My daughter, 13…She has a focus to make sure that she always has a mommy taking meds. If I don’t take anything else, she’ll push that little pill, or she’ll shake the bottle to remind me. (African American/non-Hispanic, 3 children, San Francisco, CA)

Medical Appointment Reminders

Some participants said their older children wanted to ensure they attended health appointments:

…. like I told my daughter yesterday I had a doctor’s appointment today. She is up at 6:00 in the morning…she texts me and asks me… ‘What time is your appointment?’ I text her back… ‘Not this dang early! After lunch.’ She is like… ‘Oh, go back to sleep.’ Well, I’m up now…. (African American/non-Hispanic Participant, 2 children, San Francisco, CA)

Specifically, one mother discussed how her children had connected her to a mobile application to assist with appointment reminders:

…They will ask me … ‘So, when’s the next appointment?’ Sometimes I forget that… my baby was the one who signed me up for the portal because it shows up in my emails and as text message when my next appointment is… (African American/non-Hispanic Participant, 4 children, Birmingham, AL)

Social support networks for mothers

Participants shared that family and HIV support groups provided vital emotional support and resources such as assistance with childcare and guidance on candid discussions with children about HIV. These support systems enabled mothers to navigate caregiving roles while managing challenges of living with a chronic condition, enhancing their well-being.

Emotional Support

One participant discussed how her parents’ support gave her strength throughout difficult times:

Knowing that I have my mother and my father, that they really care for me… that kind of makes me feel [stronger], like [powerful]. I feel better. (Hispanic/Latina Participant, 3 children, San Francisco, CA)

Another participant mentioned how the HIV community could be a source of support for mothers living with HIV who are raising children, as she stated:

The people within the HIV community are very supportive to each other when it comes down to parenting. Everybody has very positive, nurturing feedback with people with babies. (Multiracial Participant, 1 child, San Francisco, CA)

Access to Resources

Some participants emphasised the importance of HIV support groups for mothers living with HIV, which offered valuable connections to resources and community support services:

We were the first women in the Bay area who are in recovery and who are positive and pregnant. I got into that support. We had support groups for pregnant women who were positive, and that was really good. So, when I finally had my daughter in [housing] and with these [AIDS service organisation], she did not come out positive. She was negative. I lived in [housing] for almost six months with her… (White/non-Hispanic Participant, 3 children, San Francisco, CA)

Participants also recounted how family members such as parents could provide support through various means.

My mom is my main support that I have… she helps me financially because it’s just hard living with this and all of the agencies I deal with. I live basically on Social Security, which pays my rent, my health insurance, and that’s it. So, she helps me with the rest of it… (Multiracial Participant, 0 children, San Francisco, CA)

Additionally, participants highlighted family members’ support in the form of childcare, underscoring the crucial role of family support in managing HIV- and motherhood-related challenges.

Stressors tied to responsibilities of motherhood

Many participants detailed how motherhood duties could be a significant source of stress for women living with HIV.

Difficulties with Caretaking Duties

Participants reported how caring for family members can raise stress levels and anxiety, leading to greater concern over worsening HIV-related health outcomes:

… I think a lot of my stressing and the anxieties, all of those things, I think that affects my health in a big way. They say that stress is not good for somebody with the virus. That’s all I do is stress, especially behind two of my sons. Every time they call me, they just oh, man, I fall apart. (Hispanic/Latina Participant, 5 children, San Francisco, CA)

One participant shared her experience as a temporary caregiver for her sister’s children during a particularly challenging period. When her sister faced difficulties, she cared for her nieces and nephews. However, this family stress adversely affected the participant’s physical well-being due to the added responsibilities of caring for children:

I kind of took them … for a while, but this was right during the time when I was diagnosed so [older niece], the older daughter, was driving me freaking crazy and she started wearing my immune system down. That is what made me end up having to go on meds. She was wearing me down. She was stressing me out. I was 21 years old with three kids, three of my sister’s kids. (African American/non-Hispanic Participant, 1 child, Atlanta, GA)

Stigma related to being a mother living with HIV

Participants recounted stigmatising encounters as HIV-positive mothers, both with family and friends and in healthcare settings, which contributed to feeling isolated.

Reproductive-focused HIV stigma

Some participants felt stigmatised by healthcare professionals who discouraged them from having children due to their HIV status. In response to an interviewer question one participant shared her encounter in the mid-1990s with a healthcare professional who was unsupportive of her pregnancy:

The only time that I really experienced… anything as far as that goes is when I got pregnant with my daughter, I was going to a women’s clinic here in San Francisco. And the doctor there, who I had, thought that I should terminate the pregnancy…She didn’t think I should have the baby, because of my status. And she outright told me that………. But, as soon as she found out that I was pregnant, and because I was positive, she was, ‘No, you should, you should terminate the pregnancy. You shouldn’t bring a child into this world.’ (Native American Participant, 4 children, San Francisco, CA)

Participants also revealed facing unfavourable judgement and stigma from family or friends regarding women living with HIV who were expecting a child. Some family members reacted negatively due to a lack of understanding about mother-to-child transmission. One participant, discussing her challenges, shared the hurtful comments she encountered:

I’ve heard somebody say… ‘I wonder does she give it to her baby?’ … I’ve heard somebody say, ‘She ain’t going to be here long though to see her baby graduate.’ They say some hurtful stuff. And me being me, I just sit there and not saying nothing because I haven’t got to the point where I can tell the world yet. (African American/non-Hispanic Participant, 0 children, Jackson, MI)

Disclosure-related anxiety and empowerment

Considering their own experiences of HIV-related stigma or anticipation of stigma, numerous participants debated disclosing their HIV diagnosis to their children. They voiced concern about the negative responses their children might face if their HIV status becomes public knowledge:

Even though it’s not supposed to, people still talk. So, I don’t want any care [at the local hospital]. My daughter is in everything. She’s in the band. She’s a cheerleader. She’s on the basketball team. She’s on the track team. She’s starting her eleventh year of dance this year. She is involved in a lot of community activities, and that’s where my part of the stigma comes in. I know children can be really cruel, and I don’t want her to bear the sins of the mother. (White/non-Hispanic Participant, 2 children, Jackson, MI)

Participants conveyed that sharing their HIV status with their children allowed them to address misconceptions related to HIV transmission and diagnosis. By openly discussing their condition with their children, participants also hoped to use their personal experiences to counteract potential stigma against people living with HIV.

I have my children, those are my only big, major concerns, that when I go, I want my kids not to feel… I don’t want them to feel like they have to pity me. I want them to empower themselves on how to stay safe. (African American/non-Hispanic Participant, 1 child, San Francisco, CA)

I kind of like want to arm my kids because when they go to school, they’re going to get misinformation. I educated my kids about me being positive… I made sure to tell them things as they went along. I guess it was therapeutic for both of us because they got to know what’s really going on and then … I get a chance to do this better than the way my parents did. (Multiracial Participant, 2 children, San Francisco, CA)

Discussion

This study provides insights into how motherhood, together with family and related support networks, influence HIV care management and wellbeing for women living with HIV in the USA. Findings align with prior research on the important role that mother-child relationships play as motivators and facilitators of health in the context of HIV (Boehme et al. 2014; Fletcher et al. 2016; Liamputtong 2013; Sullivan et al. 2021), and highlight the continuing role of motherhood in life and health circumstances as women living with HIV age. Despite this relatively old study sample with respect to reproductive age, participants discussed historical and recent experiences with barriers and facilitators that were salient to their current care management and wellbeing as mothers living with HIV. Findings highlight the need to explore opportunities to support HIV care and management among mothers across the life course.

Consistent with previous literature, participants voiced the importance of their children motivating them to prioritise their health and engage in life-sustaining behaviours such as medication use (Boehme et al. 2014; Fletcher et al. 2016). For example, participants discussed the desire to stay healthy for their children as a reason for engaging in HIV care. Mothers living with HIV in a study in Alabama, USA reported better medication adherence and successful appointment management (Boehme et al. 2014). Findings indicate the potential benefits of including children in interventions for mothers living with HIV. A previous pilot trial of IMAGE (Improving Mothers’ Parenting Abilities, Growth, and Effectiveness), a parenting and self-care intervention, demonstrated improved support-seeking behaviours in children, enhanced maternal mental health, and reported stronger parent-child relationships when both child and parent were involved in the intervention (Murphy et al. 2017).

Participants in this study credited support persons and groups for maintaining positivity during tough times, and providing valuable advice, feedback, financial aid and access to necessities like housing. Findings highlight the importance of social connections and support for HIV self-management and care continuum outcomes for women living with HIV, including mothers, as corroborated by a robust body of research (Chandran et al. 2018; Chandran et al. 2021; Lambert et al. 2022; Sommer et al. 2023). In consequence, several social support-focused interventions have been developed for women and mothers living with HIV with promising programme outcomes that include decreased stigma, sustained engagement in HIV care, and sustained viral suppression (Goh et al. 2024; Potter et al. 2019; Rao et al. 2018).

The role of motherhood in complicating self-care, including HIV-self management, is consistent with findings elsewhere in the existing literature (Kedia, Dillon and Basu 2020; Webel et al. 2013). The challenges of meeting children’s basic needs and overall childcare burden contribute to lower healthcare engagement among mothers living with HIV in studies conducted in Alabama, USA (Boehme et al. 2014; Walcott et al. 2016). These stressors highlight the necessity for focused support to help women living with HIV in managing both their caregiving roles and chronic health conditions. The need for programmes focused on stress management, parenting strategies as a person living with HIV, and family-specific health education were previously highlighted in an evaluation of the Healthy MOMS intervention, a stress-reduction and social support intervention for mothers living with HIV (Johnson et al. 2015).

Despite advances in HIV treatment, prevention of mother-to-child transmission, and efforts to address stigma, women with HIV still experience intersecting HIV-related and reproductive stigma from healthcare providers and family members (Cuca and Dawson Rose 2016). The convergence of gender-based stigma and HIV-related stigma and their impact on mothers living with HIV, signals the need for stigma-reduction programmes focusing on families of those living with HIV and medical providers, specifically including in reproductive health. Existing tools and programmes for healthcare workers include an online ‘Test Yourself for Hidden Bias’ survey to privately assess and address implicit biases (Geter, Herron and Sutton 2018), a social-behavioural stigma-reduction workshop (Batey et al. 2016), and a multi-level behavioural- and structural- level stigma reduction intervention (Li et al. 2013).

Limitations and Strengths

Study findings must be considered within methodological limitations regarding the initial interview guide, participant age, and sexuality. The topic of motherhood emerged from participant responses and interviewer probes into these responses. It is possible that additional perspectives might have been captured had been an explicit focus on motherhood in the interview guide. Additionally, the timing of participants’ pregnancies and the age ranges of participant’s children were not reported, except when mentioned in passing by participants.

The perspectives shared by this study sample are potentially different from those of younger mothers who may vary in their ability to recall events regarding motherhood, such as pregnancy and related stigma (Althubaiti 2016). Also, the limited representation of bisexual, lesbian and queer women could limit the breadth of understanding of how lived experiences shape the role of being a mother and access to support within this context.

Despite these limitations, however, this study adds to the existing literature on HIV and motherhood due to the emergent methodological approach and the diverse geographic and age representation among participants. The topic of motherhood emerged saliently and recurrently in participants’ discussions regarding their HIV diagnosis, care management experiences, and perceptions and experiences of stigma and discrimination, resulting in the iterative development of the ‘motherhood’ sub-code. Many existing studies focusing on mothers living with HIV are based outside of the USA, primarily in Africa. Studies from the USA have taken place in single cities or regions. This study explores the experiences of mothers living with HIV in multiple cities and regions across the USA, varying in urbanicity and rurality. Additionally, the study included women beyond childbearing age, shedding light on the perspectives of mothers with older children and grandmothers living with HIV, an understudied group in the HIV literature.

Conclusion

This study identified facilitators and barriers to HIV care, medication adherence, and treatment among women with HIV, within the context of the motherhood. Future research should explore opportunities to promote reproductive autonomy, manage family responsibilities, and prevent and mitigate HIV-related stigma so as to optimise facilitators and minimise barriers to HIV care and well-being for mothers. Our research also underscores the necessity for broader development of programmes, such as peer mentorship initiatives in the USs, which have proven effective elsewhere but are currently underutilised in the USA. (Igumbor et al. 2019; Akinde et al. 2019; McLeish and Redshaw 2016). There is a noticeable disparity in programmatic support for women living with HIV compared to other affected groups, notably men who have sex with men and transgender people. Closing this gap is imperative for ensuring equitable support and resources for all individuals living with HIV.