‘The tablets make a certain noise’: uncovering barriers and enablers related to providing PMTCT services to adolescents and young women living with HIV in Zimbabwe

Abstract

Background

Zimbabwe antenatal HIV prevalence rate is 16.1%. HIV-positive pregnant adolescent girls and young women (AYW) are at high risk to experience perinatal mental health challenges, attributed to a combination of factors including HIV status, stigma and perinatal depression. Perinatal depression and stigma among AYW is understudied in Zimbabwe and may affect short- and long-term health of HIV positive mothers and their children, and can impact treatment adherence.

Methods

Qualitative data was gathered from four focus group discussions with (2 urban and 2 rural) PMTCT providers (N = 17). Focus group discussions were also conducted among AYW clients (N = 20) from two clinics in Mashonaland East.

Results

Qualitative analyses identified patterns related to: (1) drop out and loss to follow up, (2) retention and adherence, (3) recurring feelings of internalized stigma; and (4) acceptability of potential MH interventions. MH services are not available and AYW have limited access to adherence counseling (1–2 times at onset). Psychological support was not available at either clinic, despite both providers and clients perceiving high rates of stigma, discrimination, and challenges with disclosure. Challenges related to long waits for ART distribution and gaps in disclosure support emerged as barriers. Providers noted that AYW present as anxious (non-diagnosed), and attribute depression to those clients who are lost to follow up, stating lack of time to screen for MH related issues or actively refer them for services. Challenges related to the ability to provide strong advice and support for disclosure also emerged among providers.

Conclusions

This study can contribute to policy and practice recommendations to better integrate MH into HIV services and develop person-centered service models for HIV positive AYW.

HIGHLIGHTS

• Perinatal adolescents and young women (AYW) living with HIV have gaps in retention and care in the current Zimbabwe PMTCT service model.

• Mental health stigma must be addressed to integrate mental health into HIV services.

• HIV providers are aware of the need to provide mental health support to reduce loss to follow-up.

• Mental health screening and referrals for services are not part of standard care for perinatal HIV positive AYW in Zimbabwe.

• Linkages between disclosure and AYW mental health was identified as a challenge by HIV providers.

• Context responsive interventions can support integration of mental health screening, services, and referrals.

Keywords:

• HIV/AIDS
• adolescent girls and young women
• mental health
• PMTCT
• Zimbabwe

1. Introduction

Women in Zimbabwe have one of the highest antenatal HIV infection rates in the world at 16.1% while the mother-to-child transmission rate remains above 5% (Zimbabwe Ministry of Health and Child Care (MOHCC) [1]). The country failed to eliminate vertical HIV transmission by 2022, as anticipated, despite achieving the 95–95–95 targets [2]. Pregnancy among women ages 15–19 in Zimbabwe is among the highest in the world with 24% beginning childbearing during this period with dramatically higher rates among adolescent/young women (AYW) in rural settings compared to urban (28.7% vs. 7.3%) [3]. Emerging data from programs in sub-Saharan Africa highlight that HIV-infected pregnant AYW have poorer PMTCT follow-up outcomes which may explain higher rates of HIV transmission to infants [4]. In Zimbabwe, antenatal attendance, antiretroviral coverage are more than 95% implying the presence of other factors promoting vertical HIV transmission. Zimbabwe has strived to eliminate vertical HIV transmission even before making Option B + as a standard of care in 2013 to expedite ART for treatment and PMTCT. However, the mother-to-child transmission (MTCT) rate has stagnated at slightly more than 5% although other process and outcome indicators for elimination of vertical HIV transmission have been achieved [5]. Additionally, internalized HIV stigma can lead to symptoms of depression and negatively impact MH among PLHIV [6,7]. By affecting adherence to ART, stigma and mental health (MH) issues may hinder efforts to end HIV by 2030 as it requires people, including AYW with HIV reach and sustain viral suppression.

Women living with HIV are more likely to experience stigma and MH problems compared to HIV positive men and HIV-negative women [8,9], and adolescent mothers are up to twice as likely to experience postpartum depression in comparison to adult postpartum women [10]. HIV-positive pregnant and postpartum women may face MH challenges from two principal sources: (a) the impact of their HIV-positive status on their health and that of their baby, and (b) perinatal depression that is a significant health problem for 10–35% of women [11,12]. Zimbabwe continues to have major gaps in availability of MH care and treatment, and poor MH and HIV stigma has been correlated with reduced retention in HIV care, increased likelihood to initiate antiretroviral therapy at lower CD4+ T cell counts, higher viral loads, decreased adherence; and, as a result, increased risk of mother-to-child transmission of HIV [8,13–17]. Perinatal depression and stigma among HIV-positive AYW mothers in Zimbabwe is an understudied epidemic affecting the short- and long-term health of mothers and their children, with positive MH and low levels of stigma being a critical part of adherence [4,13].

Retention of women in the PMTCT cascade is a common challenge in PMTCT programs. For instance, emerging literature from sub-Saharan Africa show that approximately 25–50% of women on ART at delivery may be lost from care during the postpartum period [18]. Poor retention is attributable to same day initiation of ART or initiation during pregnancy or breastfeeding, poor psychosocial support and urban-based PMTCT programs [19]. Evidence from other regions demonstrates that a context responsive MH, stigma reduction, overt evidence of personal and child health and HIV service integration improves retention/adherence [7,8,13,20,21] yet there is little evidence to inform context responsive interventions that target AYW (15–24) in Zimbabwe. Through focus group discussions with providers and clients within a PMTCT clinic in Zimbabwe, this study aims to contribute information on the nature of existing PMTCT services for post-partum AYW living with HIV and within that context uncover the barriers and enablers of PMTCT services and to better understand the feasibility and acceptability of improving MH and other supportive services to improve treatment adherence and retention in care for HIV positive pregnant AYW in Zimbabwe.

2. Methods

2.1. Theoretical framework

This study is guided by socio-ecological theory [22] acknowledging a health system framework where the individual, the service provider, and the service organization/clinic are all interconnected. Accessing HIV services and treatment is an interconnected exchange between the client/individual with providers who work at the clinic, these two levels surround the person receiving care. All these systems are interconnected and as the client accesses services they may be either negatively or positively impacted by the transactions between these systems [22]. As we collected the voices and experiences from both providers and AYW clients living with HIV, we sought to understand the relationships between the two groups of people as they interact in their environment, informed by a constructivist paradigm, where reality is derived from analyzing the data that emerged [23]. This theory frames the discussion and results sections below.

2.2. Study setting

The study was conducted in Mashonaland East Province as it has the highest number of women initiated annually on ART during antenatal care and has the largest number of HIV positive women identified in the postnatal period in the country [24]. The rural province also has 96.3% antenatal clinic attendance by pregnant women and the second highest HIV prevalence rate in Zimbabwe, after Manicaland Province. Ten percent of the Zimbabwean population resides in Mashonaland East. The four focus group discussions (FGD) were held in two clinics. Epworth Clinic has a peri-urban setting, and Kunaka Clinic is in a rural setting.

2.3. Sampling and participants

To uncover the barriers and enablers to person-centered PMTCT services for AYW we are focused on learning about the experiences of the people receiving care (AYW living with HIV and enrolled in PMTCT services) as well of those providing PMTCT services. Qualitative data were collected in July–August 2019 via in-depth FGD with 20 PMTCT AYW clients and 17 providers in two clinics (one urban and one rural), totaling 37 participants (Table 1). Participant selection for each FGD was done purposively, at least a week before the day of the FGD.

Table 1. Overview of participants.

Focus group type	Location	Number (N)	Rural/Urban	Age range (median)	Years working in PMTCT (mean)	Duration PMTCT program
AYW	Epworth	10	Peri-urban	19–24 (21.5)	–	>1 year
	Kunaka	10	Rural	18–24 (21.5)	–	6 months->1 year
Providers	Epworth	10	Peri-urban	23–52 (32.8)	1–9 (1.4)	–
	Kunaka	7	Rural	24–41 (31.7)	2–12 (5.4)	–

A total of 20 AYW living with HIV PMTCT clients participated in the FGDs, all were infected with HIV perinatally. In the rural Kunaka clinic ten AYW participated in the FGD with ages ranging from 18 to 24 with the median age being 22. Eight of the ten AYW were enrolled in the PMTCT program for more than a year. In the urban Epworth clinic ten AYW participated in the FGD, ages ranging from 19 to 24, mean age 21.5. All ten AYW had been enrolled in PMTCT services for more than one year.

A total of 17 PMTCT providers participated in the FGDs, all were women. In the rural Kunaka clinic seven providers participated (four nurses, two counselors, and one data analyst), ages ranged from 24 to 41 (mean age 31.7). These seven providers had from one to nine years of experience (mean years of experience 1.4). In the urban Epworth clinic ten providers participated in the FGD (five nurses, two health educators, three counselors, and one data analyst), ages ranging from 23 to 52, mean age 32.8. These ten providers had from two to 12 years of experience (mean years of experience 5.4).

2.4. Data collection

The FGD were conducted in a private room provided at the PMTCT site and a five-dollar transport reimbursement were provided for the FGD participants. All FGD sessions were audio-tape recorded. One author (AN) moderated all four FGDs and operated the recorder. All recordings were transcribed. The two focus groups involving health workers were conducted in English language, which is the acceptable language for professional communication. FGDs with women AYW women were conducted in the vernacular Shona Language. All the FGDs were guided by a semi-structured interview tool. Mean FDG duration was 51 min. The researcher (AN) asked open-ended questions focused on key domains to better understand services and the barriers and enablers to adherence and retention in care. Questions were informed by the literature, and tailored to each population (client or provider). Each question included standard probes. These probes were rarely necessary, but were available. The second half of the interview focused on co-constructing recommendations for action in policy, programming, and research. See Appendix 1 for the interview guide.

2.5. Ethical considerations

The study was approved by the Provincial Medical Director, Mashonaland East province, the Joint Research Ethics Committee for the University of Zimbabwe, College of Health Sciences and Parirenyatwa Group of Hospitals (JREC); Reference number: 110/16, and the Medical Research Council of Zimbabwe (MRCZ); approval number: MRCZ/A/2087. Data were collected after getting permission from the Provincial Medical Director of Mashonaland East Province, respective DMOs (district medical officer) at selected sites and ethical clearance from JREC and MRCZ. Permission was also sought from the District Medical Officer (DMO) and the clinic Nurse Manager. All participants received an information letter outlining aim, procedure, the right to withdraw at any moment, privacy, contact details and the possibility of receiving appropriate service referral and provided written informed consent to participate in the study.

2.6. Data analysis

Transcription data was analyzed using NVivo (2020) software. A skeleton coding frame was set up using the key themes identified. Initial transcripts were coded separately by two members of the study team (MS and MD) according to the framework and compared to ensure inter-coder reliability for each entry. The main author (MS) analyzed the transcribed interviews constantly comparing the data, which included line by line coding and clustering families of information around the substance of the data identified. Items of similar content were grouped together using open coding, and then further grouping occurred using axial coding of the written text. Axial and open coding the interview text allowed the deconstruction of the text and led to the emergence of common themes and recommendations for action.

3. Results

In the sections below, we describe how providers and perinatally infected PMTCT clients living with HIV explain their motivations to engage in PMTCT services and the barriers faced in receiving PMTCT services at the individual, provider, and health service delivery levels.

3.1. AYW enablers and barriers

3.1.1. Stigma

AYW consistently spoke of stigma as a barrier at the individual, community, and services/treatment levels. Many spoke of how persistent stigma is, despite increased access to ART:

Stigma is still there. Even in the communities where we stay for some its big news, like they gossip to say; Did you know Mrs. So and So is on ARVs? Some assume they are negative and spreading other people’s statuses. Or they may say Mrs. So and So did not have ANC because she has HIV. -AYW, Kunaka Clinic

Data from AYW also spoke of the harm and stress they have experienced from community-level stigma:

We are not really saying its bad but for my next-door neighbor to know just like that and start spreading the news. It’s not fair. The next thing other neighbors stop touching your things thinking that they will get infected too. It’s painful. -AYW, Epworth Clinic

Someone may see someone, they know from the community in the hospital queue, that person may just disappear [lost to follow-up]. -AYW, Kunaka Clinic

People fear that community members may know that they are taking medication. -AYW, Kunaka Clinic

Stigma was also linked to service delivery. When AYW returned to the clinic with their child for follow-up visits and to pick up medication post-delivery, they felt exposed as HIV positive. There was consensus on the difference between being pregnant and getting services compared to returning for ANC services when they have a baby:

Can we please have a ‘one stop shop’ where we get everything in one place. We want to be separated from ordinary patients. When we go to the pharmacy our names are called out and they give us the medication in full view of the public and other patients. Remember those containers for ARVs are not mistakable. -AYW, Epworth Clinic

The need for more privacy, and fear of chance meetings with other community members when accessing services, was also mentioned by AYM.

The other issue, if your child gets tested, you are then made to sit where everyone is passing by. Everyone wants to ask and know what is happening. Its stressful. -AYW, Kunaka Clinic

You meet here at the clinic by chance and when that person reaches the community, she does not tell people that they were also collecting ARVs but they talk about you. -AYW, Kunaka Clinic

The location of waiting to receive services was mentioned as well, and the focus group in the more rural setting spoke to service being integrated as a helping with privacy.

In rural areas…someone may think that if people see me sitting on these benches, people will think I have come to collect ARVs…but they will never know as there are so many programs here it doesn’t mean that anyone sitting on benches came to collect ARVs. -AYW, Kunaka Clinic

AYW from both focus groups requested separate services, perhaps at separate times or days.

We don’t want to be mixed with those who have come for ANC and us with children because people will wonder why you are in that queue when you have already delivered. We want to be given services differently. It’s better that way. They will know you are collecting ART because remember, the tablets make a certain noise from their container. -AYW, Kunaka Clinic

Just separate pregnant women from those with children. When we come for post-natal services, if I come with my child, we also want to be given the same date as that of my child instead of my child having a different date from mine. -AYW, Kunaka Clinic

3.1.2. Disclosure and partner involvement

Disclosure, as discussed by AYW, was identified as both a barrier and an enabler. It was an enabler as disclosure was linked to both acceptance of HIV status and also positive relationships with families and current partners.

My first husband…tested positive shortly before he died. All along he was being treated for tuberculosis at XY hospital. So, after his death, I kept coming for tests and eventually I tested HIV positive. So, I told my current husband that background and I showed him my first husband’s hospital cards. I gave him a choice. If he didn’t want me like that, it was up to him. He accepted me. -AYW, Epworth Clinic

Partners who openly share their status and both being on antiretroviral treatment (ART) was noted as beneficial and enabled positive adherence practices ‘as if you are both on medication, the husband doesn’t refuse using protection.’ Some AYW spoke of not verbally disclosing status, but silently taking ART together as a couple.

[With] my current husband I did not disclose my status, I just couldn’t…that is not something you can waffle about, when I moved in with him I just took my ARVs as usual surprisingly he never asked me what they were for…he also hadn’t told me he was on ART, he would swallow his and I would swallow mine…we have never discussed it…but we understand each other. -AYW, Kunaka Clinic

Barriers linked to disclosure emerged linked to the lack of Lack of partner disclosure. This was identified as a barrier and was also spoken of as something that was linked to negative health outcomes and secrecy.

Some do not disclose to partners. Like say I come and get tested and am positive. As I process this, I may realize that my partner is a difficult person and will never accept such things. I may choose to keep quiet instead of facing that chaos that might come with telling him. This makes it difficult for me to come and collect my ARVs. That’s why some people default until they get sick. -AYW, Epworth Clinic

AYW spoke about feeling more comfortable disclosing to family/relatives compared to others in the community.

As for me when I tested positive for HIV, I told my relatives…it occurred to me that if I don’t disclose, a relative might see the tablets in my bag and will start talking about it. This might hurt me. -AYW, Epworth Clinic

3.2. Provider enablers and barriers

3.2.1. Stigma

Similar to AYW the focus groups for providers spoke frequently of stigma associated with individuals and also of stigma that may impact the individual as she was receiving services at the health facility. Specifically, issues related to defaulters were linked to receiving services outside of Harare to avoid being recognized, ‘[with defaulters] we call them one after the other. Some may come back, but many of the numbers given by defaulters are fake.’ Secrecy and hiding emerged with, ‘[clients] hide things…and secretly come here. We aren’t able to follow-up clients from other provinces.’ Internalized stigma, linked to feelings of shame emerged, reinforcing how individuals-particularly those who end up defaulting-go for services outside of their home community.

We have problems with contact details which clients give us. They are ashamed of refusing with the details so they leave fake details. We’re at the periphery of Epworth as you can see. We have quite a number of clients coming from Harare. -Provider, Epworth Clinic

Some providers themselves were openly using language that evoked blame and shame, stating that AYW

got what they deserved. It’s complex. Everybody has their beliefs. You can’t easily convince people

[to abstain from sex pre-marriage]. -Provider, Epworth Clinic

Additionally, certain elements linked to receiving ART and care for HIV were noted to be stigmatizing. Clients could be identified as HIV positive if they had ‘green books’ with them, or were ‘waiting for medicine’ in certain locations at the clinic, or had ‘plastic bottles which cause pills to rattle inside’ that are ‘quite unpopular with patients.’ Many providers identified the need to offer potential solutions to these problems that were linked to how services were delivered at their clinics.

3.2.2. Disclosure and partner involvement

When providers discussed disclosure, issues related to emotional trauma, trust, and the time it takes to understand what an HIV diagnosis means to them. Specifically, one provider stated:

We tell clients to disclose their [HIV] status to their loved ones. Unfortunately, when they disclose to their partner, the partner also takes time to process the information. They may react, may ask questions which our clients may not be in a position to answer. We had a sad story where our client who had disclosed her status to her husband then suffered emotional trauma. -Provider, Epworth Clinic

Issues related to non-adherence and the issue of disclosing being linked to social support that may enable adherence emerged.

That one is the biggest challenge. It sometimes causes women to stop taking medicine. Because of disclosure issues, the women won’t even come back for follow-up visits when you expect them. -Provider, Kunaka Clinic

Additionally, disclosure was linked to clients being lost in the system. Many providers spoke to being unable to follow up with clients because they have given false names/information. Providers stated these clients are likely to be receiving services in a clinic outside of their home/neighborhood as it is more anonymous. ‘They [clients] don’t want to be followed up. Or it may be due to disclosure issues. They may not trust their relatives at home, to disclose their status.’ -Provider, Kunaka Clinic

The importance of male involvement emerged, and many providers noted the difference

Between practices among discordant and concordant couples as in discordant couples AGYW ‘do not usually disclose to their husbands.’ But in concordant couples counseling emerges as protective as ‘if both partners are counselled, they plan together, encourage each other. Then both the women and their offspring can then easily adhere to medicine.’ Having supportive partners was mentioned as being protective and encouraging related to retention and adherence.

When husbands are involved in care, they may support their wives…in many ways…like escorting the women during visits. Or giving them the go ahead to come to hospital. A married woman can’t just make appointments. Somebody for whom dowry was paid. So male involvement may unlock the liberty to come to hospital. There are many appointments involved in PMTCT. -Provider, Epworth Clinic

Negative outcomes, such as defaulting from treatment and being afraid of ‘chaos’ in the home linked to disclosure and non-disclosure. One provider discussed a multi-step thought process to better understand ART adherence and retention.

Say I come and get tested and am positive. As I process this, I may realize that my partner is a difficult person and will never accept such things. I may choose to keep quiet instead of facing that chaos that might come with telling him. This makes it difficult for me to come and collect my ARVs. That’s why some people default until they get sick. -Provider, Kunaka Clinic

3.3. Younger client’s enablers and barriers

3.3.1 As the participants in the AYW focus groups were all between 18 and 24 we specifically asked about their experiences when they were younger and first initiated on ART and receiving PMTCT services to understand their perspective on this age cohort. In some cases, this was informed by the AYW’s own lived experiences and in some is was reflective of their own perceptions of being young, pregnant, and HIV positive. Additionally, providers talked about the unique challenges associated with delivering care to younger adolescents, noting high levels of shame and stigma, the results focused on this population are provided below. AYW perspective

Some discussed how a pregnant adolescent can find out she was perinatally infected upon receiving ANC services for the first time.

We have women who are born HIV positive and discover it around 14 to 15 years…the partner in their adult life may not accept it then it becomes difficult for this person to keep coming to collect medication. They may also be bitter and wonder why they got infected in the first place when it’s not their fault. -AYW, Epworth Clinic

Education about medication and the maturity required linked to adherence was mentioned by both AYM focus groups.

Some [clients are] as young as 12. Adults are more serious on taking medication than younger ones. They may take tablets but they are not yet mature, they may occasionally skip taking the tablets. -AYW, Kunaka Clinic

The focus on education and self-determination was mentioned compared to be told to take medication and not understanding why among younger clients.

If you sit with them [adolescents] now and ask why they are taking medication, they will tell you that because they were told to do so. They have no appreciation…hey have no idea of what first line and second line is. -AYW, Kunaka Clinic

The term ‘acceptance’ was used and was linked to maturity and not being able to ‘accept’ their status as they became older, as ‘for younger women, I think the chances of spreading HIV is higher because for me as an adult, I can accept my status but for a 17-year-old, it’s another issue.’ Additionally, the concept of hiding one’s status in fear of reducing the stress associated with community level stigma also emerged.

When I had my first child, people spread news of my status so I would hide. Eventually I accepted that people will always talk…for younger women, they may not be in a position to take that pressure. -AYW, Kunaka Clinic

3.3.2. Provider perspective

The data includes provider’s perceptions of challenges that younger clients may experience when accessing PMTCT services. When asked about younger clients, many providers talked about this group having as feelings of shame.

They’re shy. Some are not at ease getting PMTCT services. They are ashamed of what society may think of them when they come here and sit together with mature women. Society doesn’t expect them to acquire HIV at such young ages. Most of them are used to enjoying life. –Provider, Epworth Clinic

Some providers notably used blame in their responses of how they care for younger clients, ‘they enjoy but do not want to be responsible for the consequences. Some of them behave like school girls. Playing hide and seek with us.’ Stigma and lack of acceptance among younger clients also emerged ‘they want to appear as if they don’t have the infection, to the public.’ In both focus groups providers talked about how younger clients milled around the clinic, perhaps not entering due to fear, or other feelings linked to stigma and shame.

[Younger clients] stand at the gate you can see some of the young clients roaming outside. The may seem as people who have come to that borehole. But then you can tell from their clothes that they are dressed for something else. Not just people dressed to fetch water for domestic use. –Provider, Epworth Clinic

4. Discussion

The findings highlighted several barriers that exist in the context of providing of PMTCT to AYW, most notably the impact and pervasive nature of stigma emerged strongly. While not a complete surprise, the power of these results clearly out that stigma impacts both receiving and providing care. Although significant strides have been made in HIV treatment and it is more likely to be considered a chronic, life-time illness, compared to being perceived as a death sentence less than two decades ago, stigma still persists. The intersection of HIV and MH stigma compounds experiences of self-stigma, contributing to individuals feeling ashamed or embarrassed to seek help or disclose their struggles. Stigma can prevent AYW from accessing the necessary support and services they need to address both their mental health and HIV concerns. Additionally, the study identifies knowledge gaps in how to best provide adolescent-friendly services in the context of PMTCT. Findings suggest that there is a lack of knowledge among healthcare providers about how to effectively cater to the unique needs of AYW, including how to provide non-judgmental and person-centered care that prioritizes stigma reduction and how to best support beneficial disclosure. This knowledge gap further hinders the delivery of appropriate and effective care for young people and may contribute to further adherence challenges [25,26].

Furthermore, the study reveals a disconnect in the care relationship between healthcare providers and adolescents, referred to as ‘provider juxtaposition disconnect.’ This implies that there is a lack of understanding or miscommunication between healthcare providers and AYW who are seeing HIV services and could also need additional mental health and psychosocial support to improve disclosure support, to improve adherence and, treatment continuity. Such a disconnect can lead to ineffective treatment outcomes and hinder the establishment of a trusting therapeutic relationship. Pregnancy alone is a time for disclosure, usually of the pregnancy itself, so there is a need to explore interventions that work within that context to improve partner support and disclosure [27]. The AYW who shared their experiences mentioned some cases where familial and partner disclosure (implicit and explicit) was useful and beneficial to their own health and sense of acceptance.

Interestingly, a prominent theme that has emerged in the literature regarding feasibility and acceptability of service integration that did not appear within our results was the burden of integration on nurses, also referred to as ‘integration overload’ [28]. This refers to nurses being overwhelmed with various responsibilities and tasks related to integrating mental health services into their existing workload. This overload can potentially impact the quality and accessibility of mental health care provided by nurses.

The results identified a number of opportunities or enablers that can help overcome these barriers linked to stigma, including structural issues linked to how pills are received, when care is provided, and how it is provided. Another opportunity is working to improve provider-client communication, focusing more strongly on providing respectful and person-centred care to all clients, especially AYW. Enhancing communication channels between healthcare providers and young individuals seeking help can foster trust, understanding, and better treatment outcomes. Another opportunity identified is increasing partner involvement. Involving AYW partners such as husbands/partners, parents or guardians in AYWHIV care can improve support and help to reduce stigma associated with being HIV positive. Services should include additional support systems for young individuals and contribute to more comprehensive treatment plans that improve both mother and infant health and wellbeing outcomes.

Lastly and perhaps most importantly, service delivery should work to de-stigmatize all steps of the client experience, from intake to prescription pick-up to follow up care. By reducing experiences of stigma surrounding HIV and working to support beneficial disclosure practices we can work to improve mental health issues and improve PMTCT services so more AYW feel comfortable disclosing their struggles and seeking appropriate support without fear of judgment or discrimination.

4.1. Reflections on strengths and limitations

This study key strengths includes uncovering the voices and experiences of clients and providers. Young positive women share their experiences in ART care during pregnancy and upon enrolment into Option B+. Additionally, we were able to explore providers perspectives on how they provide care and perceive these clients in both urban and rural clinic settings. Enablers and barriers both emerged and were analysed to provide a more complete picture on the lived experiences of AYW clients and those providers responsible for their care. While the results are not generalizable the inclusion of providers and clients in urban and rural settings provides a more holistic view of their experiences. Another limitation was related to the timing as due to the COVID-19 pandemic occurred after the data was collected and during this time the PMTCT service delivery model may have increased MH issues among pregnant women. As a result, the study may miss some important MH issues obtaining in the current PMTCT program. Rigor would be increased in this study if the researchers were able to share the findings with the participants and repeat the cycle of analysis and reflection; however, this step was not possible during this study time-period due to the impact of COVID-19 throughout 2020–2022 in Zimbabwe and globally.

4.3. Conclusion and recommendations

Overall, these findings shed light on both barriers and opportunities as guided by the socio-ecological model within AYW HIV as it relates to person-centered PMTCT services. Addressing these barriers while capitalizing on opportunities can lead to improved access, quality, and outcomes in PMTCT care for AYW. Recommendations include:

1. Train healthcare providers on identifying and addressing AYW stigma and disclosure interventions during PMTCT services

2. Create safe and private spaces for pregnant AYW individuals to disclose their needs and concerns without fear of judgment or discrimination

3. Develop targeted educational materials and resources specifically tailored for AYW regarding perinatal care

4. Promote respectful and person-centered communication skills training for healthcare providers working with pregnant AYW individuals

5. Integration overload should be considered when planning future PMTCT policy and practice.

6. Develop strategies to actively engage AYW partners and families (as relevant) in prenatal visits, childbirth education, and postpartum support

Disclosure statement

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

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Appendix 1:

 Questionnaires

A PMTCT programmers and providers

1. Which PMTCT services do adolescent girls and young women (AGYW) find most important? (please tick only one)

   • ANC services,

   • HIV testing,

   • Social support with peers,

   • ART uptake,

   • Adherence support,

   • Counseling,

   • Other, please specify ________________________________

2. What are some of the benefits for AGYW experience in PMTCT?

   1. What are some of the drawbacks?

3. We would also like to know what positive outcomes you have observed from AGYW enrolled in PMTCT services. (please tick all that apply)

   • Increase in viral suppression

   • Increase initiation of ART

   • Higher adherence

   • Higher retention

   • Increase in referrals to HIV care and support services

   • Higher linkages to other programs for comprehensive support

   • Higher level of peer support

   • Overall higher satisfaction of PLHIV with services

   • Other, please specify_______________________

4. Do you know any AGYW who participated in PMTCT services and then stopped? Do you know why they stopped?

5. Think about PMTCT services for AGYW (18–24), what is the main challenge they face accessing services?

   1. Why?

   2. Probe: People related? Policy related? Facility hours? Gender-related? Informed knowledge and perception?

6. Think about PMTCT services for AG (15–17), what is the main challenge they face accessing services?

   1. Why?

   2. Probe: People related? Policy related? Facility hours? Gender-related? Informed knowledge and perception?

7. Do you ever see AGYW clients who seem more worried or anxious compared to non HIV positive pregnant AGYW?

   1. If yes, probe what approximate percentage?

   2. If yes, probe why?

   3. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

8. Do you ever see AGYW clients who seem more sad or depressed compared to non HIV positive pregnant AGYW?

   1. If yes, probe what approximate percentage?

   2. If yes, probe why?

   3. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

9. What components of PMTCT services for AGYW may help reduce stigma for this population? Please explain how or provide an example.

10. What components of PMTCT services for AGYW could bring new concerns for stigma among some? Please explain how or provide an example.

11. Are there contextual factors that facilitate or hinder the implementation of PMTCT services for AGYW?

    1. Probe: What are they? People related? Transport related? Support related?

12. Are there certain models of providing PMTCT for AGYW that you feel are successful?

    1. Probe: Which approaches?

    2. What characteristics of these approaches make them desirable to this population?

13. Are there certain PMTCT models for AGYW that you feel could provide sustainable solutions to the challenges associated with retention to ART for this population?

    1. Probe: Which approaches?

    2. What characteristics contribute to sustainability?

14. Are there certain PMTCT models for AGYW that you feel could provide sustainable solutions to the challenges associated with adherence to ART for this population?

    1. Probe: Which approaches?

    2. What characteristics contribute to sustainability?

15. Please briefly describe the lessons learned or tips you’d give to another colleague considering implementing PMTCT services for AGYW.

B Adolescents and young women (18–24) accessing PMTCT services

1. Please briefly describe the PMTCT services that are most helpful for you (2–3 sentences).

   1. Probe: ANC related? HIV testing related? Medication/ART related? Support related (specify if peer or provider or family)? Adherence related?

2. We would also like to know what positive outcomes you have experienced from PMTCT services. (please tick all that apply)

   • Increase in viral suppression

   • Higher adherence

   • Higher retention

   • Increase in referrals to HIV care and support services

   • Higher linkages to other programs for holistic support

   • Higher level of peer support

   • Overall higher satisfaction of PLHIV with services

   • Other, please specify_______________________

3. Think about when accessing PMTCT services, what is the main challenge you have?

   1. Why?

   2. Probe: People related? Transport related? Policy related? Facility hours? Gender-related? Informed knowledge and perception?

4. Are there any other challenges you face in accessing PMTCT services?

   1. Probe: Do others you know experience challenges?

5. Think about PMTCT services for AG (15–17), what is the main challenge they face accessing services?

   1. Why?

   2. Probe: People related? Transport related? Policy related? Facility hours? Gender-related? Informed knowledge and perception?

6. Are there any unique challenges younger adolescents (15–17) face in accessing PMTCT services?

   1. Probe: Do you know younger adolescents who experience challenges?

7. What made you want to participate in PMTCT services?

   1. Probe: Are you still participating in PMTCT services? If not, why not?

   2. Probe: Have others you know dropped out of PMTCT services? Why?

• 7. Do you ever feel more worried while in PMTCT services compared to prior to using PMTCT services?

  1. If yes, probe why?

  2. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

  3. If no, say: Do you know people or friends in PMTCT services who feel more worried than before?

  4. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

• 8. Do you ever feel more sad while in PMTCT services compared to prior to using PMTCT services? Probe why, why not?

  1. If yes, probe why?

  2. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

  3. If no, say: Do you know people or friends in PMTCT services who feel more sad than before?

  4. Probe: pregnancy related? HIV related? Support related? Relationship related? Stigma related?

• 9. Do PMTCT services have any practices that reduce stigma? Please explain or provide an example

• 10. Does accessing PMTCT increase your feelings of stigma in any way? Please explain or provide an example.

• 11. Think about when you receive PMTCT services, what is the most helpful element of the services?

  1. Why?

  2. Probe: People or support related? Transport related? Policy related? Facility hours?

• 12. Does anything else help you access PMTCT services?

• 13. Do you know anyone who was participating in PMTCT services and then stopped? Do you know why they stopped?

• 14. Do you know anyone who chose not to participate in PMTCT services? Do you know they decided not to?

• 15. Do PMTCT services make it easy for you to get your medication?

  1. Why?

  2. Probe: People or support related? Transport related? Policy related? Facility hours?

• 16. Is there anything else PMTCT services can do to make it easier/better for you to take your medications?

• 17. Is there anything else PMTCT services can do for younger adolescents (15–17) to make it easier/better for them to take medication?

• 18. Would you recommend PMTCT services to other AGYW living with HIV? Why or why not?