Childbirth experiences among women living with HIV in Kilimanjaro, Tanzania:A mixed method study on respectful maternity care

doi:10.21203/rs.3.rs-3232894/v1

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Research Article

Childbirth experiences among women living with HIV in Kilimanjaro, Tanzania:A mixed method study on respectful maternity care

https://doi.org/10.21203/rs.3.rs-3232894/v1

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Background

This mixed-method study explored the experiences of respectful maternity care (RMC) during childbirth among women living with HIV (WLHIV) in Tanzania.

Method

We recruited 103 WLHIV from six healthcare facilities within 48 hours of giving birth. Participants completed a survey using audio computer-assisted self-interview survey technology. In-depth interviews were conducted with 12 pregnant WLHIV and 12 postpartum WLHIV.

Findings

In the survey reports from RMC were overall positive. The median score on the full RMC scale (possible range: 0-100) was 74.4, with the highest scores in the subscale of dignity and respect (83.3), followed by supportive care (77.8) and communication and autonomy (62.9). Qualitative data suggest a general appreciation of care received, but some participants reported that providers neglected them, avoided physical contact, or did not seek their consent for procedures. In addition, they reported issues of overcrowding, long waiting times for care services, and restrictions on birth companions.

Discussion

This data suggests there is an opportunity for additional provider training in clinical empathy and patient-centered practices to address the unique needs of WLHIV and enhance their overall maternity care satisfaction and health outcomes.

Tanzania

childbirth experiences

HIV

mixed method study

postpartum

respectful maternity care

Respectful maternity care (RMC) is defined as high-quality care that maintains women’s dignity, ensures privacy and confidentiality, avoids harm, and enables informed choice [1]. RMC during labor and delivery prioritizes women’s needs and preferences and is based on principles of dignity, ethics, and respect for human rights [2, 3]. A childbirth experience is a significant event in a woman’s life, not only as a transition to parenthood but also as a transformative experience during which respectful care or the lack thereof can affect clinical and psychological outcomes for both mothers and their newborns [4]. While RMC is a priority for all birthing women, RMC for women living with HIV (WLHIV) is particularly important to promote the well-being and healthcare engagement of this vulnerable population, particularly considering the impact of HIV stigma. Several studies in Sub-Saharan Africa have reported the impact of HIV-related stigma on long-term care management and retention in the prevention of mother-to-child transmission (PMTCT) programs [5–8].

In Tanzania, 92% of pregnant WLHIV were enrolled in PMTCT services in 2019. Nevertheless, care engagement continues to be a challenge, with only 83% of mothers remaining in HIV care during the postpartum period [9]. The provision of RMC may impact this retention in care, as evidence suggests that labor and delivery (L&D) providers may deliver suboptimal and stigmatizing care to WLHIV [10–12]. Research on RMC practices for WLHIV at the national level is limited. However, RMC challenges have been reported among the general population. A mixed-method study of 2,000 postpartum women in Tanzania found that lack of privacy, overcrowding, and stockouts of basic resources were barriers to RMC [11].

WLHIV may experience heightened emotions during their pregnancy due to their HIV status including fear, stigma (both internalized and anticipated), guilt, and negative emotions associated with the possibility of giving birth to a child with HIV [13]. HIV-related stigma, discrimination, disrespect, and abuse during childbirth can create barriers to the use of essential maternal and HIV health services. Disrespectful care can also cause women to have suboptimal engagement in HIV care and medication adherence, or lead women to drop out of care altogether during the postpartum period [7, 11, 12, 14–16]. A meta-analysis that included 35 studies conducted in Africa found that 27.1% of postpartum WLHIV were no longer in HIV care 6 months post-partum. Stigma, fear of disclosure, lack of support from a partner and others, denial of one’s status, and negative experiences with care providers were revealed to undermine the retention of WLHIV in healthcare services [17]. RMC during childbirth can help WLHIV to deepen their trust in the healthcare system [18], and in turn improve long-term engagement in HIV care.

The goal of this mixed-methods study was to understand the experiences of RMC in the intrapartum period among WLHIV in Tanzania. Using both survey and interview data, we aimed to: 1) quantify RMC practices from the point of view of WLHIV giving birth, and 2) qualitatively describe experiences with RMC across three domains (dignity and respect; supportive care; communication and autonomy).

Setting

This study was conducted in six clinics in the Moshi (urban) and Rombo (rural) districts in the Kilimanjaro region of Tanzania. We purposefully selected health facilities in order to ensure a high number of WLHIV giving birth to meet recruitment targets, and to have balanced geographical representation of rural and urban clinics. The selection process was informed by data review and guidance from the Kilimanjaro Regional Medical Officer. Within each district, we worked with one district hospital and two health centers, all of which are considered primary healthcare centers [19]. The two district hospitals are private, faith-based facilities and the remaining four health centers are public facilities. All clinics follow the national guidelines for PMTCT [20].

Procedures

The data for this study was collected in preparation for a clinical trial [BLINDED FOR REVIEW] [21]. In-depth interviews (n = 24) were conducted between February and March 2022 with pregnant (n = 12) and postnatal (n = 12) WLHIV who attended PMTCT clinics. Survey data (n = 103) was then collected between March and July 2022 among postpartum WLHIV within 48 hours of delivery and before their discharge from the healthcare facilities. Surveys and interviews were conducted in Kiswahili by Tanzanian research assistants, who were trained in data collection and received ongoing supervision throughout the study. Participants were enrolled if they were at least 18 years of age, mentally capable of providing consent, and had been diagnosed with HIV before or during their pregnancy. Participants received 5,000 Tanzanian shillings (approximately $2) to compensate for their time and travel costs. All participants provided written informed consent to participate in the study. Details of the study protocol have been published elsewhere [21].

Surveys

Individuals were eligible to participate in the survey if they were living with HIV (as documented in their clinical records), gave birth in one of the study facilities, and were able to communicate in Kiswahili. When a potentially eligible woman gave birth in a study clinic, the provider on duty would inform the individual of the study and gauge her interest. If interested, the provider would contact the research team via phone call or text message, and a member of the team would travel to the clinic to meet the mother. After consent, participants completed a structured survey in Kiswahili using a touchscreen tablet and headphones using audio computer-assisted self-interview (ACASI) technology via the questionnaire development system (QDS) software. The ACASI process ensures participant privacy and reduces social bias, thus improving data validity [22]. The survey took approximately 30–45 minutes to complete, and a member of the study team was available throughout for any questions. A locator form was completed to allow for a brief follow-up survey approximately one month after the birth.

In-depth interviews

Individuals were eligible to participate in in-depth interviews (IDIs) if they were either pregnant or recently (within six months) postpartum and enrolled in PMTCT care at one of the six study clinics. When a potentially eligible participant came for an appointment, the PMTCT nurse on duty informed patients of the study, and, if interested, a study team member met with the patient in a private room within the PMTCT clinic to obtain consent and conduct the interview. The IDIs were conducted in Kiswahili using a semi-structured interview guide. The interviews were audio recorded with the participant’s permission and later transcribed and translated into English by a professional translator. Ten percent of the translations were checked for accuracy by a second translator and confirmed to be of high quality. The length of the interviews ranged from 30 to 80 minutes. The final sample size (n = 24) was determined by thematic saturation [23].

Measures

Survey data

The survey included demographic questions about age, education, marital status, literacy, religion, and household wealth. Household wealth was measured in quintiles and calculated from the wealth index based on 10 questions about household assets. HIV-related data included the time of HIV diagnosis (during the current pregnancy or prior), HIV disclosure to a partner or others, partner’s HIV status, and adherence to antiretroviral therapy (ARVs).

To measure women's experiences of RMC during labor and delivery, we used a Kiswahili version of the validated Person-Centered Maternity Care (PCMC) scale developed by Afulani and colleagues [24–27]. The PCMC scale has 30 items, with higher scores corresponding to higher levels of RMC. Questions spanned three domains: dignity and respect (6 items), supportive care (15 items), and communication and autonomy (9 items). Summed measures were created and standardized from 0 to 100 for the full RMC score (α = 0.86), and for the three domains: dignity and respect (α = 0.44), supportive care (α = 0.72), and communication and autonomy (α = 0.75).

Approximately one month after discharge, a telephone interview was conducted to collect data on postpartum medication adherence. Participants were asked about adherence to ARVs over the past four days, as well as administration of nevirapine to the neonate.

In-depth qualitative interviews

We developed a semi-structured interview guide to understand women's childbirth experiences. The guide was developed in English and translated into Kiswahili. The content of the guide was informed by the literature on RMC and the experience of the research team members. The guide included questions about the participant’s feelings about pregnancy, family relationships, previous birth experiences, expectations related to birth, antenatal clinic environment, and relationships with providers. Postpartum women were asked about their childbirth experience, including specific probes to explore feelings at the onset of labor, arrival at the clinic, treatment at the clinic during labor and delivery, the presence or absence of a birth companion, emotions immediately postpartum, and discharge from the facility. We also explored the role of HIV stigma during childbirth (internalized and experienced) and postpartum care engagement and adherence to antiretroviral therapy (ART) medication.

Data processing and analysis

Survey data

The participant survey data obtained through the QDS and collected via ACASI were exported to Statistical Package for Social Science (SPSS) software v.25 for data cleaning and analysis. Participant characteristics were reported using percentages (for categorial variables) or medians and interquartile ranges (for continuous variables). For the descriptive reporting of the 30 items in the PCMC measure, we applied a dichotomous categorization, classifying each item as “no report” vs. “any report”. We accomplished this by considering any degree of endorsement as a “Yes” and the absence of endorsement as a “No”.

Qualitative data

The IDI data were analyzed using thematic content analysis based on phenomenology theory [28]. First, each interview transcript was summarized by a team member into a narrative memo organized around the following domains: practices of RMC, perceptions and experiences related to HIV and stigma, and types of intervention suggestions from participants. In each section, the memo author highlighted core ideas that reflected emerging themes in the transcript. Direct quotes from the transcripts were used throughout the memo to support coding, maintain the integrity and context of the participant’s responses, and give examples to illuminate emerging themes. All transcripts and memos were reviewed by senior research team members to confirm accuracy and clarity; thereafter, two team members engaged in a consensus-building discussion to finalize the memo to ensure that it was capturing emerging salient themes.

The document memos were imported into NVivo (Version 12) for coding. Codes were identified using an a-priori framework of the domains of RMC: dignity and respect (non-stigmatizing environment and confidentiality around HIV status); supportive care (attention during labor and delivery, and presence of a birth companions during labor and delivery); and communication and autonomy (consent, health education and ability to ask questions). All codes and corresponding quotes were sorted according to their similarities and differences into relevant themes for each of the three domains of RMC. Representative quotations were selected to provide evidence for the synthesized findings.

Description of sample

The characteristics of the survey sample (n=103) are described in Table 1.

Table 1. Characteristics of study participants (n=103) in the survey

	n (%) ^a
Demographics
Age (Median [Q1, Q3])	29 (25,33)
Education level
Primary or lower	58 (56.3)
More than primary	45 (43.7)
Marital status
Not married	45 (43.7)
Married	57 (55.3)
Literacy: reading & writing
No, cannot read or write well	27 (26.2)
Yes, can read and write well	76 (73.8)
Wealth quintile
Lowest or middle quintile	24 (23.5)
Highest quintile	78 (75.7)
Religion
Christian	80 (77.7)
Muslim and other	23 (22.3)
Birth type
Vaginal	75 (72.8)
Cesarean Section	28 (27.2)
Gender of provider
Male	53 (51.5)
Female	50 (48.5)
Time of delivery
Morning/Afternoon	53 (51.5)
Evening/Night	50 (48.5)
Breastfeeding education/support
No	26 (25.2)
Yes	78 (74.8)
Facility recommended to the friends for labor & delivery
No	9 (8.7)
Yes	94 (91.3)

HIV Characteristics
Time of HIV diagnosis
Before this pregnancy	49 (47.6)
During ANC/delivery	53 (51.5)
HIV disclosure general
Nobody	36 (35.0)
Anybody	67 (65.0)
HIV disclosure to partner
Partner doesn’t know status/no partner	31 (30.1)
Partner knows status	70 (68.0)
Partner’s HIV status
Negative/unknown/no partner	76 (73.8)
Positive	26 (25.2)
Taking ARVs on admission and adherent
No	12 (11.7)
Yes	90 (87.4)
Taking ARVs 3 weeks post discharge and adherent
No	2 (2.4)
Yes	83 (97.6)
Baby took Nevirapine
Never took	1 (1.2)
Started but stopped	1 (1.2)
Baby died	1 (1.2)
Yes	82 (96.4)

^a Summation may not add to the total due to missing values.

The characteristics of the qualitative sample (n=24) are described in Table 2.

Table 2. Characteristics of the qualitative study participants (n=24)

	n (%)
Demographics
Age (Median [Q1, Q3])	28 (26,34)
Education level
Primary or lower	12 (50.0)
More than primary	12 (50.0)
Marital status
Not married	11 (45.8)
Married	13 (54.2)

Birth history
Parity
Primipara	11 (45.8)
Multipara	13 (54.2)
Time of HIV diagnosis
Before this pregnancy	17 (70.8)
During ANC/delivery	7 (29.2)

Overall reports of RMC for WLHIV were high (Figure 1). The median (IQR) score of the full RMC scale was 74.4 (61.1, 82.8). Considering the three RMC subscale domains, scores were highest in dignity and respect (83.3; IQR 66.7, 94.4), followed by supportive care (77.8; IQR 63.3, 86.7), and then communication and autonomy (62.9; IQR 53.7, 77.8).

Below, we describe both the survey data and the qualitative data in each of the three domains of RMC.

Domain 1: Dignity and respect

For all items, most participants reported the presence of RMC practices. The items where participants most commonly reported poor RMC practices were: not having privacy in the labor room during examinations (29%, 30/103), experiencing verbal abuse from providers (20%, 21/103), and experiencing physical abuse from providers (15%, 15/103). Table 3 summarizes the survey responses to the six items in the Dignity and Respect sub-scale.

Table 3. RMC items in dignity and respect subscale for WLHIV (n=103) ^a

	Yes n (%)	No n (%)
Friendly providers	102 (99.0)	1 (1.0)
Treated with respect	101 (98.1)	2 (1.3)
Medical Record kept confidential	97 (94.2)	6 (5.8)
Physical abuse	15 (14.6)	88 (85.4)
Verbal abuse	21 (20.4)	82 (79.6)
Visual privacy given	72 (69.9)	30 (29.1)

^a Summation may not add to the total due to missing values.

Emergent Themes

In the qualitative data, two themes emerged related to the domain of dignity and respect: 1) stigma and discrimination, and 2) confidentiality around HIV status.

Stigma and discrimination

Most study participants reported that they were treated with kindness and respect by perinatal providers. Several participants expressed their gratitude for the care they received.

“I don’t see that there is anything bad because they care.” (Pregnant WLHIV, Age 28)

“The services at childbirth made me feel good because I felt normal, and I was treated well and therefore there was no way I was affected negatively … I was treated just like the other patients were treated.” (Postpartum WLHIV, Age 42)

For many, the respectful care they received contrasted with the stigma they had anticipated when seeking perinatal care as a WLHIV.

“I thought they would not accept me well, but they helped me a lot. They were able to help me without differences. They did not treat me differently.” (Postpartum WLHIV, Age 23)

“You can imagine how poorly you might be treated if even the doctor is afraid to touch you. That’s our biggest fear. However, I really appreciated them because they treated me with respect. They held my arm without any stigma. Frankly, here I have never been shown that I have a problem/I am sick” (Pregnant WLHIV, Age 41).

However, four WLHIV spoke about abuse or neglect they had to endure during childbirth. Reports centered largely around providers avoiding touching them or treating them in a less dignified manner due to their HIV status.

“It’s like, you have come and are told to get out of the bed. It is like they (providers) can’t touch you with bare hands. (Providers say) ‘You want us to help you but how can we do that if you didn’t bring gloves?’ Isn’t that stigma?” (Postpartum WLHIV, Age 24)

“There are some of the service providers that after you have given birth, they wash you in a bad way and look at you in a bad way on the private parts.” (Postpartum WLHIV, Age 37)

Participants reported that some providers actively sought to alleviate any perceptions of discrimination or mistreatment by reassuring them of their intentions.

“They (providers) said don’t worry about what we are trying to say, it’s not that we want to hurt you. Our main concern is keeping you and the baby safe.” (Postpartum WLHIV, Age 27).

Participants mentioned that certain healthcare providers engaged in verbal or physical abuse during the process of labor and delivery.

“…. If you are careless, they shout at you. They may tell you ‘Be in a proper position’; you can even be slapped; they may even slap you. They tell you don’t tighten your legs, that was their harshness.” (Pregnant WLHIV, Age 31).

Confidentiality of HIV status

Most participants felt that the providers went out of their way to maintain confidentiality around their HIV status. Participants provided examples of how providers often used non-verbal communication or took them into a separate room to discuss anything specific to their HIV.

“They showed great respect for confidentiality by asking me sensitive questions without anyone else present.” (Postpartum WLHIV, Age 37).

“Even when all my in-laws accompany me, the nurses always maintain confidentiality and never discuss my health in their presence.” (Pregnant WLHIV, Age 31).

“Yes, they ensured confidentiality when instructing me on how to administer medication to the baby. They took me into a private room where it was just us.” (Postpartum WLHIV, Age 34).

However, some participants expressed concerns about their HIV status being shared with others without their consent. The physical environment of the clinic, where patients were together in a single ward and labored behind thin screens, did not protect patients’ privacy and created the possibility that other patients might learn about their HIV status.

“Everybody heard what I was told (by providers): ‘You are coming here without gloves, and you know your status.’ People must have understood what was going on (my HIV status), so you will feel ashamed…... I felt embarrassed, I felt bad, I wished I could give birth on that day and be discharged on the very same day.” (Postpartum WLHIV, Age 29)

One participant shared how she heard doctors talking about her HIV status near her bed. She perceived this as gossip and was also concerned about involuntary disclosure of her HIV status.

“Maybe because of my status they thought I might infect them, that was why they stigmatized me…. I could hear them telling stories outside. They were talking while I was left on the bed.…They should not stigmatize us. They should see us as normal people.” (Postpartum WLHIV, Age 29)

Domain 2: Supportive care

For all items, most patients reported the presence of RMC practices. The items where participants most commonly reported poor RMC practices were: being in a crowded space (38%, 39/103), experiencing long wait times (33%, 34/103), and not being allowed to have companions present during labor (28%, 29/103) or delivery (27%, 28/103). Table 4 summarizes the survey responses to the 15 items in the supportive care subscale.

Table 4. RMC items in the supportive care subscale for WLHIV (n=103) ^a

	Yes, or not applicable n (%)	No n (%)
Safe facility	102 (99.0)	1 (1.0)
Electricity in facility	101 (98.1)	2 (1.9)
Trust the providers in the facility	100 (97.1)	3 (2.9)
Attention when help was needed	99 (96.1)	4 (3.9)
Water in facility	99 (96.1)	4 (3.9)
Providers took the best care	97 (94.2)	5 (4.9)
Providers support of anxiety and fears	94 (91.3)*	9 (8.7)
Clean facility	92 (89.3)	11 (10.7)
Enough staff	91 (88.3)	12 (11.7)
Talked about feeling with providers	87 (84.5)	16 (15.5)
Providers helped to control pain	87 (84.5)	16 (15.5)
Allowed delivery support (family or friends)	73 (70.9)*	28 (27.2)
Allowed for labor support (family or friends)	73 (70.8)*	29 (28.2)
Waited a long time for care	34 (33.0)	69 (67.0)
Crowded ward	39 (37.9)	64 (62.1)

^a Summation may not add to the total due to missing values.

* Not applicable was provided as an option for these items

Emergent Themes

In the qualitative data, two themes emerged related to the domain of supportive care: 1) attention during labor and delivery, and 2) birth companions during labor and delivery.

Attention during labor and delivery

Most participants acknowledged the compassionate care they received from nurses during labor and delivery, with many expressing gratitude for the assistance provided through the entire birthing process.

“To be honest, the nurses I encountered during the night shift were exceptional. They treated me with great care and kindness… I noticed that they did not treat me any differently, despite being aware of my HIV status.” (Postpartum WLHIV, Age 28).

“He (provider) assured me not to worry, considering it was my first pregnancy and I was unsure of what to expect. They provided constant encouragement, reassuring me that everything would be fine and that I would have a successful delivery.” (Pregnant WLHIV, Age 28).

However, despite the satisfaction mentioned, some participants spoke about the importance of prompt and respectful attention to their needs, especially related to pain, and some experiences of being ignored by providers or of providers acting as if they were a burden. For participants who spoke about neglect by providers, they attributed this to their HIV status.

“…a nurse cannot assist you because she knows that you have that problem (HIV). I was left on the bed, saying they cannot touch me if I don’t have gloves. I didn’t feel comfortable staying there…” (Postpartum WLHIV, Age 29)

“When I went into labor (her previous pregnancy) they gave me the bed, but they were hesitating to examine me. The pain was greater, I called, but they did not come, later when she examined me, she said ‘You’re very dilated. What were you waiting for there? ….” (Pregnant WLHIV, Age 31)

Participants emphasized the importance of being listened to attentively and having healthcare providers ask in-depth questions about their wellbeing.

“Someone should listen to you completely, ask you in detail, how you feel. They should tell us what's going on when they receive you.” (Postpartum WLHIV, Age 27)

“[The midwife] was too busy with their telephone, using earphones... Yes. I can say that maybe they did not hear me. It is possible that a younger person will fail to give you good service by not listening to you properly.” (Pregnant WLHIV, Age 22)

Participants acknowledged that there were institutional challenges that impacted the attention they received during L&D, most notably a shortage of healthcare providers and overcrowding in the facilities.

“Because sometimes it happens that maybe three people come, and you find that there are only two nurses. All (the women) want to deliver at the same time.” (Postpartum WLHIV, Age 24)

“We should not be many in delivering room [or] two people per bed.” (Postpartum WLHIV, Age 27)

“The main issue I have with this clinic is the long queues. Waiting for services can be a significant challenge. I would suggest that they explore ways to reduce waiting times as it would greatly benefit patients.” (Pregnant WLHIV, Age 28).

Birth companions during labor and delivery

Although about half of participants reported in the survey that they were allowed to have companions during labor and delivery, some WLHIV noted that birth partners were discouraged or not allowed, leading to participants feeling lonely during L&D.

“It is not allowed. I mean if your relatives should come, they stop at the door, they don’t enter. The nurses will be very angry and upset if they should find a relative in there.” (Postpartum WLHIV, Age 37)

“Frankly, I felt lonely because I didn’t have anyone from home, and I felt that I was alone because I wasn’t accustomed to any of the people there.” (Postpartum WLHIV, Age 24)

“I felt bad, I was lonely myself, no one to talk to, I wish I could have her (mother), but it was impossible.” (Postpartum WLHIV, Age 23)

Some participants wished that their husband or their mother would have been allowed to be present during the delivery to provide them with support.

“I felt alright not having anyone with me during the birth, but I would have appreciated having my mother by my side.” (Postpartum WLHIV, Age 29).

“If it’s not my husband, then no one else. I mean, if he’s the one present, I can expect to be treated like a queen at home.” (Pregnant WLHIV, Age 28).

Some participants stressed a desire to have had their male partners to accompany them during childbirth, because they felt that this would strengthen their future relationships.

“Let the man know how much pain I have been through.” (Postpartum WLHIV, Age 27).

“I found (at a hospital) a woman with a one-week-old baby. She was visibly swollen and claimed to have been physically abused by her husband. If the husband had been present in labor ward to witness his wife’s suffering during childbirth, it could have potentially prevented the abusive behavior.” (Pregnant WLHIV, Age 42).

On the other hand, some participants expressed support for the restriction that birthing companions not be allowed, because they felt the presence of relatives is not necessary and may compromise the privacy of other patients.

“I felt comfortable knowing that the environment here doesn’t allow just anyone to be present. Seeing that the nurse alone was sufficient to reassure me, as not everyone is brave enough to witness a mother giving birth. How can a relative stay with me in a hospital?” (Postpartum WLHIV, Age 34).

Domain 3: Communication and autonomy

For all items, the majority of participants reported the presence of RMC practices. The items where participants most commonly reported poor RMC practices were: not being allowed to be in the position of their choice during L&D (18%, 18/103) and not being asked for consent prior to a procedure (17%, 17/103). Table 5 summarizes the survey responses to the nine items in the communication and autonomy subscale.

Table 5. RMC items in communication and autonomy subscale for WLHIV (n=103)^a

	Yes, or not applicable. n (%)	No n (%)
Patient understood provider language	101 (98.1)	2 (1.9)
Patient involved in her care	98 (95.1)*	4 (3.9)
Patient able to ask questions	92 (89.3)	10 (9.7)
Patient called by name	91 (88.3)	12 (11.7)
Provider explained medicines	90 (85.4)*	13 (12.6)
Provider introduced self	87 (84.5)	15 (14.6)
Provider explained exams/procedures	87 (84.5)	15 (14.6)
Patient asked for consent for procedures	85 (82.5)	17 (16.5)
Delivery position of choice	84 (81.6)	18 (17.5)

^a Summation may not add to the total due to missing values.

* Not applicable was provided as an option for these items

Emergent Themes

In the qualitative data, three themes emerged related to the domain of communication and autonomy: 1) explanation of procedures and consent, 2) health education, and 3) ability to ask questions.

Explanation of procedures and consent

Most participants mentioned that they received a clear explanation and were asked for consent prior to procedures throughout their birthing process.

“They provided me instructions, such as turning around, doing exercises, adjusting my position, and even suggesting drinking some porridge. I really liked it.” (Pregnant WLHIV, Age 28).

However, many study participants reported that providers engaged in discussions amongst themselves without actively involving the patient in the conversations, leaving participants to feel left out, and uninformed about their own healthcare. Participants noted that they were given medication and underwent examinations without being fully involved in the decision making.

“You hear them talking to themselves, but they did not tell you. You can hear them tell each other to put a drip on, and you can hear them converse.” (Postpartum WLHIV, Age 27)

“I just see them examining me, but they don’t tell me except that they ask me if the baby is moving. If I say ‘yes’, they go on with their examination.” (Pregnant WLHIV, Age 27)

Some participants expressed that they were not given the opportunity to have discussions with the providers regarding their preferences for alternative birth options.

“Nurses do not allow you to stand during labor and delivery. They advise you to lie on the bed when you feel the urge to push. They may explain that it is not safe to squat or sit down during this stage of labor and delivery.” (Postpartum WLHIV, Age 24).

Participants suggested that the absence of information from a provider implied that everything was normal. For example, one woman expressed that when she wasn’t told anything after her blood pressure was taken, she assumed that the finding indicated a normal blood pressure reading.

“Yes, when I saw that they kept quiet I knew that my blood pressure was good.” (Postpartum WLHIV, Age 33)

Health education

Most participants reported that they received comprehensive health education from some of their care providers, which significantly influenced their decision to continue taking their ARVs.

“Frankly speaking, the nurses have been incredibly generous in explaining things to me and providing encouragement. That I should select a time that is best for me and stick to that consistently. Their support is the reason why I continue to faithfully take my medication.” (Postpartum WLHIV, Age 24).

“The provider instructed me to follow a specific sequence when breastfeeding my baby. First, I was advised to wash my breast/nipples before breastfeeding. Then, I was told to breastfeed the milk only. Finally, they administered the medication to the baby as per their initiation.” (Postpartum WLHIV, Age 33).

“I was advised to exclusively breastfeed my baby and never give any other food or water until the completion of six months. The healthcare providers emphasized that breast milk contains all the necessary nutrients.” (Postpartum WLHIV, Age 24)

Some participants had questions specific to being a new mother with HIV, particularly regarding breastfeeding issues and medication use. Participants highlighted the need for healthcare providers to offer clear health education to enhance their knowledge.

“No, I didn’t have that opportunity to talk or be told anything, maybe about how to nurture this child and breastfeeding and medication use. I wish to be told.” (Postpartum WLHIV, Age 29)

“That is a challenge because I did not know the consequences of leaving my (HIV) medicine at home. I told the nurse I had left it, and she did not tell me that it was a problem. She told me, so what will you use? I told her I didn't know because I had left the medicine at home. And she never told me anything else.” (Postpartum WLHIV, Age 24)

Ability to ask questions

Most participants expressed that when they had questions, they received respectful answers in their native (Kiswahili) language. These experiences played a significant role in alleviating their fears and concerns.

“They (providers) are civilized and gentle in their approach. They care for the patient and demonstrate a willingness to address any problems of question that may arise. Their attentiveness and dedication help alleviate all fears and concerns.” (Postpartum WLHIV, Age 37).

One participant received a new diagnosis of HIV infection. She expressed gratitude towards the birth providers for addressing her fear of transmitting the infection to her child.

“I inquired with the nurse about the possibility of transmitting the infection to the baby if I am like this (WLHIV). The nurse assured me that if I initiated medicine early, the risk of transmitting the virus to the baby would be significantly reduced.” (Pregnant WLHIV, Age 28).

Other participants expressed that they did not have the opportunity to engage in meaningful conversations or receive necessary information from the providers. This lack of communication left them feeling uniformed and without the chance to voice their concern or seek clarification.

“I wished for that, but there was no one to encourage you to ask.” (Postpartum WLHIV, Age 25)

“At times, the provider may provide an answer that is unsatisfactory, leading to a feeling of frustration and discomfort. This can hinder the ability to ask further questions, leaving you with unsolved issues.” (Pregnant WLHIV, Age 27).

This study explored the experiences of RMC during labor and delivery among WLHIV in primary health facilities in Tanzania. RMC was assessed across three key domains: dignity and respect, supportive care, and communication and autonomy. The findings revealed that WLHIV generally reported high levels of RMC, with a median score of 74 (out of 100) on the full RMC scale. However, this score was lower compared to a previous study conducted in Dar es Salaam, Tanzania [11], which reported higher levels of RMC (88) among birthing WLHIV. The variation in these findings may be attributed to differences in the methodological approaches employed, with the current study collecting data using ACASI to ensure participant privacy and encourage open expression.

About 15–20% women reported experiencing verbal or physical abuse, and through qualitative interviews, some participants disclosed instances of neglect, lack of privacy, and confidentiality breaches during L&D. Incidences of abuse are demeaning to any woman, but for WLHIV these experiences could significantly undermine one’s trust in the healthcare system. Endorsement of these experiences was higher in this study compared to a similar study in Tanzania conducted 10 years ago [11], indicating this is an area which needs immediate attention.

Challenges identified in the supportive care domain included clinic overcrowding, long waiting times for receiving services, and inadequate attentiveness from providers. Additionally, participants expressed dissatisfaction with restrictions on birthing companions during L&D. It is worth noting that these problems can exacerbate one another, as a clinical environment with a shortage of staff and high patient volume may lead to suboptimal attention and poor quality of care. In addition, infrastructure in most Tanzania labor and delivery rooms does not allow for privacy, which makes accommodating a companion difficult. Improving infrastructure of L&D rooms to allow companions and implementing a policy that encourages the presence of birth companions could alleviate some of the demands from strained providers and create a more comfortable environment for women during childbirth. Healthcare provider burnout in these busy environments can further contribute to poor patient experiences [29, 30]. While broader systems changes are necessary to create sustainable change in this regard, providing ongoing training for healthcare providers on burnout management, empathy, and professional ethics could be a first step to improving the interactions between providers and patients.

In the communication and autonomy domain, participants reported a lack of freedom to choose their desired childbirth position and lack of consent prior to medical procedures. Notably, there are a few studies examining the potential obstacles to effective communication and preservation of women’s autonomy throughout the childbirth process [31, 32]. In-depth interviews revealed that providers often engaged in discussions without actively involving the patient, leaving them feeling excluded and uninformed about their own healthcare. Additionally, medication and examinations were administered without patients’ full involvement in decision-making. Inadequate health education, particularly regarding breastfeeding recommendations for WLHIV and the use of antiretroviral medication, was also evident. Participants expressed a desire for meaningful conversations and effective communication with providers, emphasizing the need for patient-centered care and the inclusion of women’s voices in decision-making processes. Addressing these barriers are critical to facilitate effective communication and respect for women’s autonomy.

This mixed method study captures WLHIV’s lived childbirth experience based on RMC at both private and public primary care clinics across rural and urban settings. However, it has two key limitations that must be considered. First, the data were collected within the hospital environment, which can lead to the responses being affected by social desirability bias. However, given the sensitivity of HIV stigma, we opted to collect data using ACASI technology, which has been shown to minimize the effect of social desirability significantly [22], [33]. Second, it is possible that the original meaning and context of participants’ narratives might be changed or lost during the translation process. This could potentially affect the accuracy and integrity of the translated content. We used the expertise of a bilingual (Kiswahili and English) translator, aimed to minimize any potential discrepancies or misinterpretations that could arise due to the language transfer.

This study highlights the overall high levels of RMC reported by WLHIV giving birth across six sites in the Kilimanjaro Region of Tanzania. The study also highlights areas that require improvement to address the needs and concerns of WLHIV. These include addressing institutional challenges (overcrowding and long waiting times), respecting women’s preferences regarding birth companions and birth positions, and improving communication with, and respect toward, patients. Moving forward, it is crucial to prioritize training interventions for health care providers that supports them in providing respectful and equitable maternity care for WLHIV while concurrently addressing healthcare worker scarcity and infrastructure limitations in labor and delivery settings.

Funding

The study was funded by the United States National Institutes of Health [BLINDED FOR REVIEW] and supported by the [BLINDED FOR REVIEW].

Competing interests

The authors declare they have no potential conflict of interest with respect to the research, authorship, and/or publication of the article. The research was conducted without any commercial or financial relationship that could be interpreted as a potential conflict of interest.

Ethics approval and consent to participate

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the intuitional review boards at [BLINDED FOR REVIEW] the [BLINDED FOR REVIEW], and [BLINDED FOR REVIEW]. The trial is registered at clinicaltrials.gov [BLINDED FOR REVIEW]. Informed consent was obtained from all individual participants included in the study.

Consent for publication Not applicable

Data availability

All data generated or analyzed by the survey research during the current study are provided in the supplementary information file accompanying this manuscript submission.

Code availability SPSS 25 and QDS software.

Author Contributions All authors contributed to the study’s conception and design. [BLINDED FOR REVIEW] conceptualized the study, collected the data, led the data analysis, and led the manuscript writing. [BLINDED FOR REVIEW] supervised and mentored the entire research process. [BLINDED FOR REVIEW] contributed to the study design, supported data analysis, and reviewed the manuscript multiple times. [BLINDED FOR REVIEW] reviewed and edited the manuscript, providing substantive scientific input. All authors read and approved the final manuscript.

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No competing interests reported.

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Childbirth experiences among women living with HIV in Kilimanjaro, Tanzania:A mixed method study on respectful maternity care

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