The study employed a qualitative interpretative phenomenology study design to explore the lived experiences, perceived barriers, and facilitators to the uptake of PMTCT of HIV services by HIV-positive mothers at Mtendere Clinic located in Lusaka district, serving a population of 92,152 individuals. The study spanned from February 2023 to January 2024, encompassing the entire research process from the initial development of the research proposal to the final stages of report writing and dissemination. Thirteen participants, who were HIV-positive mothers actively engaged in the EMTCT program at Mtendere Clinic, were purposefully selected for this study. The selection process adhered to the principle of data saturation, a fundamental aspect of qualitative research methodology. Data saturation was deemed to have been reached when no new insights or perspectives emerged from subsequent interviews, indicating a comprehensive understanding of the phenomenon under investigation. While the sample size of thirteen participants may appear relatively small, it aligns with the qualitative research approach focused on depth rather than breadth. Moreover, qualitative studies often prioritize in-depth exploration of individual experiences and perspectives, which can be adequately captured within smaller sample sizes. Purposive sampling was used to select HIV-positive mothers aged between 15 and 49 years enrolled in the EMTCT program at Mtendere Clinic, ensuring detailed opinions and experiences from mothers who lived the experience. The inclusion criteria comprised HIV-positive mothers aged between 15 and 49 years and women enrolled in the EMTCT program. Exclusion criteria included mothers enrolled in the EMTCT program during the current period but unable to be interviewed due to physical instability and those not willing to participate.

Ethical approval was obtained from the University of Zambia Biomedical Research Ethics Committee (UNZABREC) under reference number 3380-2022, and a certificate for researcher recognition was obtained from the National Health Research Authority (NHRA) under reference number NHRAR-R-1212/12/10/2022. Following the explanation of the participant information sheet and obtaining consent, data were collected from the mothers through face-to-face interviews held in a private room at Mtendere Clinic. Confidentiality and anonymity were maintained throughout the study, and participants were given the freedom to withdraw at any time without facing negative consequences. A counselor was present during the interviews to offer support due to the potential psychological and emotional impact of the study on participants. An audio recorder and observation notes were used to collect data while ensuring participant privacy and safety.

To data collection, an in-depth semi-structured interview guide was used. It comprised open-ended questions with participants’ characteristics under Part I, questions on lived experiences under Part II, and questions on perceived personal and health system barriers to the Uptake of EMTCT-HIV under Part III. The in-depth semi-structured interview schedule that was utilized is attached in Appendix 1 of this study.

Following the completion of the interviews, each tape-recorded session was transcribed verbatim to ensure an accurate representation of participants’ responses. The transcriptions, along with field notes, underwent multiple rounds of readings to immerse the researcher in the data. Additionally, the researcher listened to the audio recordings repeatedly to capture nuances in participants’ voices and expressions. The next step involved meticulous data organization and coding using NVIVO (version 10), a qualitative data analysis software. This facilitated the systematic organization of data and ensured consistency in the coding process. Thematic analysis, a robust qualitative analysis method, was employed to identify patterns and themes within the data. Initially, an inductive approach was used to allow themes to emerge directly from the data, enhancing the richness and depth of analysis. Codes were applied to meaningful units of data, capturing key concepts and ideas expressed by participants. Similar codes were then grouped into categories, facilitating the organization of data into coherent themes. To increase transparency and methodological rigor, several strategies were implemented. Firstly, the research process was documented meticulously, detailing each step from data collection to analysis. This documentation provided an audit trail, allowing for transparency and reproducibility of the study’s findings. Secondly, the researcher engaged in reflexivity, continuously reflecting on their own biases and assumptions throughout the research process. This self-awareness helped mitigate potential biases and ensure an objective analysis of the data. Furthermore, to enhance the credibility and trustworthiness of the findings, member checking was conducted. This involved sharing preliminary findings with participants to validate the accuracy and interpretation of their responses. Feedback from participants was incorporated into the final analysis, ensuring that their perspectives were accurately represented. Finally, to ensure the reliability of the findings, inter-coder reliability checks were conducted. This involved independent coding of a subset of data by multiple coders to assess consistency and agreement in coding decisions. Any discrepancies were resolved through discussion and consensus among the research team.

Face-to-face in-depth interviews were conducted with Thirteen participants who were HIV-positive mothers and expectant mothers enrolled in the EMTCT-HIV program at Mtendere clinic. The participants’ ages ranged from 20 to 37, most of them had attained a secondary education, and the majority were not in formal employment. Almost all of the participants (10) were married, although two were separated and one was single. In addition, the majority of women (8) were self-employed, while the rest were housewives. Four of the participants had never had children, two had one child each, and seven had at least two children. All the participants were Christians. The socio-demographic characteristics have been summarized as shown in Table 2.

Psychological and Emotional Experiences

Participants in this study expressed encountering distinct thoughts and emotions. Negative thoughts were ruminating in the minds of the participants. Most of them were concerned about the possibilities of survival and safety of their unborn child, especially those who had tested positive during their first pregnancy. The majority of the thoughts concerned survival or death from HIV. Many individuals stated that they first struggled to accept their condition initially and some reported that their husbands had difficulty understanding their condition. Many reported that they felt as though everyone was staring at them on the streets and that everyone knew about their illness, which made them feel extremely uncomfortable. This culminated into feelings of sadness, emotional distress, fear and anger as shown in the participants’ statements below:

P5. “I did not receive the news very well, I was sad and I started thinking about the possibility of having a normal child. this got to me very much and I asked myself a lot of questions. Will I be able to have more children? Will I survive this disease or maybe it’s the end of me? Will my child survive? What will people think about me? and how will I tell my husband?”

P1. “I felt very bad about my condition when I was found to be positive, I felt I could not be able to tell others about my condition, maybe my husband was not going to love me the way he does. I felt people started mistreating me at home they even started becoming distant and stopped using my things because they felt I could infect them. This was a sad experience”

P3. “Sometimes I felt like everyone was looking at me when going in the road, it is as if everyone knows my condition and this made me feel bad. I had to keep myself away from the people”.

P9. “I felt bad… I thought I was going to die and I also thought people were going to be laughing at me. I went home and I cried, I told my husband see what you have done”.

Acquisition of Knowledge about EMTCT-HIV

Practically, all of the participants had acquired some knowledge of EMTCT-HIV. Consequently, they were able to describe HIV and the primary function of EMTCT. In addition, they were able to state the various ways in which the child could become infected with the virus as shown in the statements below.

P10 “The nurses teach us about EMTCT, they told us that if you do not take the medicine the child can get infected”.

P1 “EMTCT is mostly about how the child can be protected from being infected. I was told to take the medicine, a virus can infect the child if being breastfed while with cracks on the nipples, the virus can also infect the child during the birthing process where blood can mix up with that of the mother when the nurses do not handle the process very well”.

P11 “This EMTCT program is beyond HIV prevention to the child, it is a clinic that helps in a lot of ways including cervical cancer, and tuberculosis tests are done in this clinic”.

Changes in Personal Life

Participants have expressed that living with HIV and participating in the EMTCT program came with its own problems that caused changes in their personal lives The modifications included a change in lifestyle, relationships, and self-worth as shown in the participants statements below.

P11 “I felt very bad because I will be taking the medicines every day, and I have to be giving my child medication every time to prevent the infection.”

P1 “This has affected my personal life so much and I do not interact much with my friends, sometimes I feel bad about coming to get the medication for me to prevent my child from the infection. I live in fear maybe my friends can see me when I go to the clinic and this does not give me the confidence to relate with them”

P3 “My business went down I was more focused thinking about my children, how they were going to survive without me? I thought I was going to die. These thoughts preoccupied my mind and made me lose focus on my business, I was mostly focusing on these issues such that my business was almost crumbling”.

P8 “I had to be careful with this particular child, there has been a great change about how I have been raising my children I have to watch the diet, and I am more careful”.

Support from the Spouse

Most participants in the study expressed that they received help from their spouses, whereas the others indicated that they did not obtain the necessary support. In the beginning, the majority of women’s spouses did not agree to their requirements and did not provide them with the necessary support, but as time went on, many husbands were able to support their wives in the EMTCT-HIV program. This was expressed in the participants statements below.

P8 “He encourages me a lot, he asks me to take the medication, sometimes reminds me about the timing and we usually take the medication together. Sometimes he reminds me to give the medication to the child and also on the dates to go for reviews and refills for medication”.

P3 “I talked to my husband about this condition, at first my husband stopped talking to me for a week but bit by bit he started talking to me and now gives me the needed support”.

P6 “He sends the money to support the child, sometimes I need to buy the needed food for the child and other needs”.

Support from Family

Most of the participants who revealed their status to their family members reported receiving enough support required to navigate the complexities of living with HIV and being enrolled in the EMTCT-HIV program. This was expressed in the participants’ statements below.

P8 “I disclosed this to my brother and sister they are equally supportive, and they encourage me so much “

P12 “They treat me very well; they do not go about talking behind my back”.

P5 “My family members are very supportive in that they give me all the necessary money required for my transportation to the clinic for the EMTCT program, this has really given me the confidence to continue with the program”

Support from the Health Facility

Participants in the study expressed that they received support from the health facility which helped them during the EMTCT-HIV program as shown in the participants’ statements below.

P6 “I receive a lot of support from the health facility, they teach me about how I need to continue taking the medicine, and eat proper meals as this will protect my child from getting the infection”.

P5 “Sometimes I get to meet people at the facility who are also on the same treatment for EMTCT, I draw courage from their stories most of the time, here people can encourage you with their stories”.

Health System Barriers to EMTCT Service Utilization

Participants expressed experiencing several health system-related barriers that prevented them from making efficient use of the services provided at the clinic. These health system-related barriers included inadequate treatment from the health workers and extended waiting times, as shown in the participants’ statements below.

P10 “I was not pleased the first day I came to register for the EMTCT program in this facility because the nurse and social workers were so harsh that day like it was my fault that I am HIV-positive…As a result, I attempted to stop coming for EMTCT program.”

P6 “Sometimes you have to wait the whole day for them to attend to you”

Perceived Personal Barriers to EMTCT Service Utilization.

Participants in the study also expressed their perceived personal barriers to the utilization of EMTCT services. These included a fear of stigmatization, lack of transport to the health facility and a lack of support from some family members as shown in the participants’ statements below.

P1 “I felt people started mistreating me, people home had to separate their things from mine because they felt I was going to infect them, as such I could not disclose my status to others…sometimes I feel bad about coming to get the medication for me to prevent my child from contracting the virus”.

P5 “I stay very far, and I face challenges with transport sometimes I don’t have money for bus fare so I would walk for two hours on average to reach the health facility.”

P6 “We told you in the beginning that you were going to get sick, and this sickness could affect your child, we told you now see what is happening. There is usually criticism from my sisters, and they do not offer support”.

The emotional and psychological experiences of women living with HIV in relation to the utilization of EMTCT services have been found to be mainly negative. They mainly expressed feelings of sadness and worry, especially concerning the prospect of having a healthy child and worries about their own survival. Anxieties about societal perceptions and how to disclose their status to their partners are also prevalent. In addition to emotional challenges, some participants feel self-conscious in public, believing that others are aware of their condition, leading to discomfort and isolation. Several studies, including Lumbantoruan et al. [8] , Ashaba et al. [9] , and Fagbamigbe and Idemudia [10] , have also found negative feelings and thoughts being experienced among pregnant women with HIV. Dirisu et al. [11] identify depression, fear of stigma, and low male partner involvement as obstacles to using EMTCT services, following a model by Turan and Nyblade [12] linking psychosocial implications to behavioral consequences. In contrast, Mustapha et al. [13] found positive experiences among HIV-positive mothers, with optimal EMTCT service utilization. In addition, Dovel et al. [14] and Wanyenze et al. [15] reported improved experiences in Malawi and Uganda, respectively. Discrepancies are attributed to sample heterogeneity and variations in research settings, emphasizing the need for longitudinal studies at Mtendere Clinic to understand changes in emotional experiences. The importance of comprehensive support systems, including counseling, education, and interventions should not be ignored to address the emotional and psychological well-being of these women as well as reduce HIV-related stigma.

Many women living with HIV and enrolled in the EMTCT program gained knowledge about the disease as some were able to define EMTCT and explain how infants could contract the virus. This is consistent with the findings of several other previous investigations in which mothers had acquired general knowledge of EMTCT through the program [16] [17] [18] . However, knowledge gaps may result from inefficient counseling and health education services [19] . Lack of understanding impacts the use of EMTCT-ANC services, as demonstrated by Kalembo and Zgambo [20] . Contrasting findings by Nwabueze et al. [21] and Kibao [22] show varying knowledge levels among HIV-positive women, suggesting the need for targeted Information and Communication Education [IEC] to bridge knowledge gaps.

The women’s lifestyles, relationships, and self-worth changed due to their HIV status. Silva et al. [23] , Lingen-Stallard et al., [24] ; Kelly et al., [25] also found similar alterations, including family abandonment, social isolation, doubts about self-worth and personal changes. In contrast, Contreras et al. [26] reported positive changes among Peruvian women living with HIV, emphasizing acceptance and empowerment through engagement in EMTCT programs. Differences may be attributed to participant characteristics and time elapsed since diagnosis. These findings entail the importance of providing timely psychological, social, and practical support for women diagnosed with HIV during pregnancy to better their lived experiences of living with the disease.

Most women reported receiving support from their spouses over time, although a minority disclosed not receiving support even after revealing their HIV-positive status. Shroufil et al. [27] emphasized the positive impact of partner disclosure on spousal support and adherence to EMTCT protocols. Haile and Brhan [28] found similar results with increased male partner participation in ANC/EMTCT adding to heightened awareness of VCT services. Ebuy et al., [29] also found most of the women received support from their spouses such as supporting the wives financially, reminding them to take drugs and to go for antenatal visits and attending ANC with the wives. Conversely, studies in Kampala and the Mable area of Uganda reported low male participation in PMTCT programs, highlighting inadequate spousal support [30] [31] . Kalembo and Zgambo [20] also noted low male involvement in Malawi, attributing it to cultural variations affecting spousal support. Tavory and Swidler [32] underscored cultural hindrances in Malawian society, suggesting that cultural congruence is vital for involving spouses in EMTCT programs. Therefore, ensuring cultural sensitivity in care at Mtendere Clinic is essential for effective involvement and support from spouses of women enrolled in the EMTCT program.

Women who disclosed their HIV-positive status to family members reported substantial support, especially from siblings. Tambunan and Sarumpaet [33] and Abebe et al. [34] found similar positive family support outcomes. Family support significantly influenced the likelihood of taking an HIV test and adhering to EMTCT protocols as supported by findings of Abebe et al. [34] . Halim [35] highlighted the role of family support in ANC services, while Isni [36] pointed out the fear of stigma within families. It is recommended that healthcare professionals advocate for women to disclose their status, as this may result in increased support [37] . Additionally, efforts should be made to discourage factors that may impede disclosure, such as stigma. This can be achieved through education initiatives aimed at families and communities, highlighting the importance of EMTCT services.

Mothers in the study received various forms of support from healthcare institutions, including psychological, treatment adherence, peer, and breastfeeding support. Emotional challenges related to HIV transmission to offspring were addressed through empathetic care and counseling. Mukose et al. [38] noted challenges in healthcare professional training which often impede the ongoing support required for the mothers enrolled in the EMTCT program. However, several of the healthcare professionals who had already received training lacked refresher training to be able to offer support to the mothers who were receiving PMTCT services. Consequently, it is imperative that healthcare professionals at Mtendere clinic persist in providing adequate adherence support, as it constitutes a crucial element in the battle against HIV. Peer support has also been recognized as beneficial in a similar study by Phiri et al., [39] as it provided a platform for shared experiences and encouragement among HIV-positive pregnant women. According to Akinde et al., [40] , peer mentors, who are frequently women living with HIV, have the potential to act as exemplars and motivators, cultivating a feeling of optimism and perseverance. Maternal assistance offered by the health facility with infant feeding is also another type of support, aimed to guide women in making informed decisions aligned with regional protocols. This assistance follows the guidelines set by World Health Organization [41] . Therefore, ongoing healthcare professional training, and the promotion of peer support are vital for strengthening these support systems at Mtendere Clinic.

While most mothers at Mtendere Clinic expressed satisfaction with the caliber of medical attention and professional conduct of healthcare personnel, a subset reported challenges with negative attitudes, resulting in negative feelings towards their overall experience. The notion of health workers exhibiting unfavorable demeanor is substantiated by previous research, which has recognized pessimistic attitudes and breached confidentiality as hindrances to PMTCT engagement [42] [43] . This identification of health workers’ bad attitude as a significant barrier is disheartening and unfavorable, as it may impede the essential support and care required by HIV-positive mothers [44] . Further research is imperative to investigate the impact of healthcare professionals’ attitudes on the uptake of EMTCT services, emphasizing the need to address this issue for effective HIV prevention and care. Training and sensitization programs can be implemented for healthcare professionals to promote a patient-centered approach and foster empathy and understanding towards HIV-positive mothers. Emphasizing the importance of respectful and non-judgmental communication can help improve the overall experience of mothers attending EMTCT services.

Long waiting times at Mtendere Clinic were also reported to act as a barrier to the utilization of EMTCT services, with delays in starting the program and extensive documentation processes contributing to the issue. Similar findings were reported by Kate et al. [44] in Nigeria, revealing that prolonged waiting periods as a hindrance for women seeking access to EMTCT services. The extended waiting time may result from a shortage of healthcare personnel, additional services for infants exposed to HIV, and potential scheduling challenges for HIV-positive mothers during routine under-five clinic visits. Addressing these issues, such as implementing attendance guidelines and allocating adequate medical personnel, is essential to improve the efficiency of EMTCT services and enhance accessibility [14] . Streamlining administrative processes and optimizing clinic workflows can help reduce waiting times at Mtendere Clinic. Implementing appointment systems, prioritizing urgent cases, and allocating additional staff resources during peak hours can contribute to more efficient service delivery and improve patient satisfaction with the use of EMTCT services at the facility.

Several women reported refraining from disclosing their HIV status to family members and partners due to apprehension regarding potential stigmatization and discrimination. Additionally, some women expressed concerns that their community may hold negative attitudes towards individuals living with HIV, leading them to avoid accessing EMTCT services. According to Cornelius et al., [45] stigma from family members, healthcare providers, and the local community can hinder the ability of HIV-positive mothers to access care and adhere to anti-retroviral therapy. Stigma and discrimination are factors that can hinder individuals from seeking knowledge of their HIV status, as well as lead to denial of seropositive status among women living with HIV (WLHIV), non-disclosure of HIV status to partners, and even prompt some pregnant and breastfeeding WLHIV to relocate, as noted by Tucker [46] . These factors act as formidable obstacles in the way of availing HIV prevention, testing, and treatment services. Previous research conducted by Modi et al., [47] in India, has documented the presence of stigma and the authors expounded that familiarity with preventive and care initiatives as a hindrance to the adoption of EMTCT could potentially mitigate the stigmatization of HIV among acquaintances and relatives. This suggests that a dearth of information regarding EMTCT may potentially exacerbate stigmatization within familial and social circles. On the other hand, the findings of Odiachi et al., [48] reveal that mentor mothers can utilize public disclosure in community settings as a strategy to normalize the experience of living with HIV. This approach can serve as a reflection of their ability to overcome self-stigma and lead healthy and fulfilling lives. Hence, it is imperative to consider implementing interventions such as mentor-mother peer support strategies for women living with HIV in Zambia. According to Akinde et al., [40] , women who provide mentorship and peer support to other women living with HIV are effective in reducing stigma and discrimination. This is due to their ability to demonstrate empathy and relate to the shared experiences of their peers. Additionally, their personal success in achieving the elimination of mother-to-child transmission outcomes makes them credible role models for women living with HIV. Implementing community-based awareness campaigns and education programs can help challenge stigma surrounding HIV and encourage open discussions about HIV status within families and communities. Peer support groups, led by mentor mothers who have successfully navigated the EMTCT process, can provide a supportive environment for women to share experiences, seek advice, and overcome feelings of isolation and stigma.

Inadequate support from spouses and other family members acts as a hindrance to their successful implementation of EMTCT as reported by the mothers in the EMTCT program at Mtendere Clinic. Tucker [46] reported comparable obstacles such as lack of support from spouse and relatives. Maternal figures observed that inadequate assistance primarily stemmed from societal disapproval and bias exhibited by their relatives and significant others. Individuals who are near women who are living with HIV should serve as a valuable source of support and exhibit empathy [49] . According to Zhang et al. [50] , a lack of support from partners, families, or in-laws can deter women from seeking EMTCT services. In some cases, women may fear disclosing their HIV status to their partners due to concerns about abandonment or violence. It is recommended that they be encouraged to participate in the collective effort to combat HIV. Hence, it is recommended to persist in promoting tactics such as the engagement of men in EMTCT. Engaging men in EMTCT programs through targeted outreach and education initiatives can foster greater support and involvement from spouses and family members. Providing counseling services for couples and family units, emphasizing the importance of shared decision-making in healthcare, and addressing misconceptions and fears related to HIV transmission can strengthen familial support networks and promote positive health-seeking behaviors.

One of the encountered challenges pertained to transportation to reach the EMTCT clinic. Mothers have recognized the insufficiency of funds for transportation as a hindrance to accessing EMTCT services, which is attributed to the considerable distances that women must traverse to avail themselves of such services. Previous studies by Cataldo et al., [51] Akal and Afework, [52] have revealed that lack of transportation to the medical facility is a substantial barrier. Lack of money for transportation and means of travel may be a factor in patients discontinuing treatment within the first few months of starting ART. Women should be motivated to seek care within their localities, and prompt action should be taken to address issues related to stigma and discrimination. One effective strategy for overcoming self-stigma is the implementation of mother-to-mother peer support, as demonstrated by Odiachi et al. (2021). It is recommended that measures be implemented to facilitate the establishment of healthcare services in several residencies so as to combat this transportation barrier to the use of EMTCT services. Exploring telemedicine options and mobile health clinics to provide decentralized EMTCT services in remote areas can improve accessibility and reduce reliance on long-distance travel. Additionally, local transportation authorities in Zambia can consider establishing shuttle services or subsidizing transportation costs for women attending EMTCT clinics which can help address the barrier of transportation.