Do Women Enrolled in PMTCT Understand the Recommendations: A Case Study from Kilimanjaro

Introduction

The World Health Organization launched option B+ in 2012 as a new approach in the prevention of mother-to-child transmission (PMTCT) of Human Immunodeficiency Virus (HIV). The main aim of this new approach was simplification and harmonization of treatment.^1,2 Prior to Option B+, there have been a number of PMTCT guidelines from WHO, and these have included wildly varying information. This can be exemplified by the initial recommendations emphasizing breastfeeding avoidance, where option B+ emphasizes breastfeeding support for at least one year.

Tanzania adopted Option B+ in September 2013, and it has since been the main approach to PMTCT.³ It helped Tanzania be one of the 22 countries in the Global Plan, aiming to eliminate new infections in children and protect mothers.⁴ Although the Global Plan had great successes, Tanzania’s target of having <5% mother-to-child transmission (MTCT) by 2020 was not achieved. By 2019, MTCT of HIV in Tanzania was at 10.7%.^5,6

Amongst the lessons that were hailed as essential to be carried on from the Global Plan was the participation and involvement of HIV-positive mothers in all matters pertaining to the response to the HIV epidemic. This was seen as one of the key elements behind the Global Plan’s success in lowering MTCT.⁵ The inadequate number of healthcare personnel in most developing countries has led to insufficient interaction of mothers and providers. This detracts from the PMTCT experiences of mothers.⁷

With the interaction gap between mothers and health workers in PMTCT, HIV-positive mothers, whether peers in the clinic or expert patients remain a crucial source of information and influencer of practice, particularly amongst newly diagnosed HIV positive mothers.^8,9 It is important that these influencers, particularly mothers enrolled in PMTCT, have knowledge that is current as according to the health belief model, this will likely favor their adherence.^10,11 The health belief model proposes that people will take action toward health goals if they are aware of the benefits, requirements and perceived control.¹² Applied to PMTCT, if mothers are aware of the benefits of the various steps in PMTCT, they are more likely to take steps towards adherence to the PMTCT recommendations.

Tanzania has developed guidelines for PMTCT that outline the services and counselling steps mothers should receive from healthcare workers.¹³ However, the evolution of PMTCT recommendations over the years, particularly regarding breastfeeding, has led to misconceptions amongst mothers, which has bred distrust of the recommendations and non-adherence to them.¹⁴ The level of knowledge regarding various elements of PMTCT is low in many countries, including Tanzania.^15–17 Some elements, such as points of transmission, appear to be well known to mothers, but others, such as prevention methods, time of child testing, and optimal infant feeding practices, had eluded mothers even before the option B+ era.^18–21

We sought to assess the knowledge mothers have regarding the current PMTCT recommendations as understanding the recommendations is the first step towards adhering to them.

Methods

Study Design

This cross-sectional study targeted women enrolled in and attending PMTCT clinics with children less than two years of age. The study was conducted between August 2019 – April 2020. The aim was to gauge the understanding of these women regarding the PMTCT recommendations as they form an important source of information for each other and the community. Their understanding is also a surrogate representation of how well the PMTCT messages are communicated to the beneficiaries. By employing a cross-sectional design, we were able to capture a large number of women who are beneficiaries of the PMTCT program and capture their understanding of the program in an unrehearsed setting.

Study Site and PMTCT Program

The study was conducted in the Kilimanjaro region, Northern Tanzania. The region has seven districts: Siha, Hai, Moshi district council, Moshi municipality, Rombo, Mwanga, and Same. In collaboration with the district medical officer of each of the seven districts in the region, we identified the clinics with the highest PMTCT client load in each district. Participants were then recruited from 37 clinics during their routine clinic visits.

The PMTCT clinics handle pre-natal and post-natal clients and provide PMTCT education to the clients, counselling and testing, and medication to both mothers and children. They also collect blood samples (dry blood spots (DBS) for infant testing using DNA PCR. In the clinics, mothers are meant to be counselled on HIV transmission, prevention of transferring the infection to the child, ART use for the mother and the child, infant feeding, and infant testing schedule.¹³

In most of the identified clinics, PMTCT clinic operates once a week though some with lower patient load, run once a month and some with a higher patient load run daily. The districts deliberately attempt to synchronize the clinics to run on the same day to facilitate the collection of samples for early infant HIV testing, which is run by zonal laboratories. Though most conduct them on Wednesdays, there are variations due to local influences such as market days. We visited each of the clinics on all their clinic days for one month to ensure we captured as many mothers as possible as most have monthly PMTCT visits. A marker was put on all the patient’s files that had been enrolled to avoid repetition.

Study Population

The information was collected from 521 HIV positive mothers who had children aged below two years, and the children were currently enrolled in PMTCT at any of the selected clinics. We chose post-natal mothers as they would have more exposure to the program and have first-hand experience of more aspects of PMTCT than pre-natal women. Their understanding of PMTCT recommendations could thus serve as a surrogate for whether they have the correct knowledge to communicate to other mothers. All women attending the selected clinics between August 2019 and April 2020 participated in the study.

Study Tool, Users and Content

We developed a questionnaire consisting of seven sections covering socio-demographic characteristics, birth history, HIV history, previous use of antiretroviral therapy (ART) and PMTCT, antenatal care (ANC) and PMTCT attendance in relation to reference child, counselling, and teaching received in PMTCT clinics, and knowledge of key aspects of PMTCT. The resulting English version was translated into Kiswahili and back-translated into English to ensure fidelity. Testing and pretesting was conducted on a sample of 30 women from non-participating clinics until the final tool was approved.

During data collection, the questionnaire was electronically administered in Kiswahili (participant’s national/native language) by trained research assistants using Survey-CTO^TM installed on password-secured tablets.

Data Analysis

Data analysis was performed using STATA version 15.1. Numeric variables were summarized using median and categorical variables using frequencies and percentages. Mother’s level of knowledge on PMTCT was assessed using their response to 19 questions. The questions assessed appropriate feeding duration for exclusive breastfeeding and continued breastfeeding, whether a mother can transmit to a child, when transmission occurs, methods for preventing mother-to-child transmission, duration of nevirapine prophylaxis for a new-born child, and frequency of testing for the child. To be classified as being knowledgeable on PMTCT, a mother had to have scored above the median. Comparison of the proportion of mother’s knowledge on PMTCT by participants characteristics was made using Chi-square test. Akaike information criteria (AIC) was used to select the best fitting model, where the model with the lowest AIC was considered the best. The logistic regression model was used to estimate odds ratios (OR) and the corresponding 95% confidence intervals (CI) for factors associated with knowledge on PMTCT.

All analyses were restricted to women who had ever attended ANC during their index pregnancy.

Significant association between explanatory variables and knowledge on PMTCT were evaluated at p<0.05. The variables included in the adjusted analysis were all found to be associated with PMTCT knowledge in previous literature hence were included as potential confounders.

Results

Socio-Demographic and Clinical Characteristics of Study Participants

A total of 521 mothers with children less than 24 months of age enrolled in PMTCT services were included in the study. The women came from a total of 38 clinics across the seven districts of Kilimanjaro region. The mean age of the women was 31.7 years (SD 6.6). Most of the 521 women had primary education (66.2%) and had 1–2 previous pregnancies (92%) while HIV-positive. All women had attended antenatal clinic during their pregnancy with the reference child, and 87.3% reported to have at least four visits as recommended. Of the mothers interviewed, 86.4% reported having received counselling on breastfeeding during their PMTCT visits and 92.1% reported to have been counselled on ART (Table 1).

Table 1 Socio-Demographic and Clinical Characteristics of Study Participants (N = 521)

Mothers Knowledge of PMTCT

Of the 19 knowledge items that were used to assess mothers’ knowledge; questions pertaining to ART use in prevention of mother-to-child transmission, testing for early infant diagnosis, alternative feeds for prevention of transmission and the lower risk of transmission in caesarean delivery seem to elude the mothers’ knowledge the most. The median score for knowledge was 57.9%. Overall, 64.9% of mothers scored above the median and were regarded as having good PMTCT knowledge. Only one mother was able to answer all 19 questions correctly (Table 2).

Table 2 Mothers Responses to PMTCT Knowledge Questions (N = 521)

Factors Associated with Mothers’ Knowledge on PMTCT

The factors associated with mother’s knowledge on PMTCT are shown in Table 3. Several factors appeared to increase mothers’ odds to have better PMTCT knowledge in the crude/unadjusted logistic regression analysis. These included being counselled on breastfeeding (OR=2.96, 95% CI 1.78–4.94) and ART (OR=2.56, 95% CI 1.34–4.87) compared to those who were not. There was also a marginal association between mothers having children aged <6 months (OR=1.45, 95% CI 1.00–2.09) with higher odds of PMTCT knowledge compared to those with children aged ≤6 months and the older (≥25 years) (OR=1.55, 95% CI 0.99–2.45) compared to the younger (<25 years) mothers.

Table 3 Factors Associated with Mothers’ Good Knowledge of PMTCT

After adjusting for the background and clinical characteristics of study participants, only receiving counselling on breastfeeding (OR=2.38, 95% CI 1.38–4.11) and on ART (OR=2.17, 95% CI 1.08–4.36) during PMTCT visits remained significantly associated with higher odds of better PMTCT knowledge than women who were not counselled (Table 3).

Discussion

In our study, there was a total of 521 mothers with children less than 24 months of age enrolled in PMTCT services. Of the socio-demographic and clinical characteristics of the study participants: mean age of the women was 31.7 years, 87.3% had at least four visits with the reference child, 86.4% received counselling on breastfeeding, and 92.1% were on ART during PMTCT visits. Amongst the 19 knowledge items used to assess mothers’ knowledge, 64.9% of mothers scored above the median. Despite several of the factors assessed showing to increase the odds of mothers having better PMTCT knowledge, only counselling on ART and breastfeeding during the PMTCT visits was significantly associated with good knowledge.

In our study, mothers showed varying levels of knowledge regarding different components of PMTCT. In our study, 1 in 5 mothers did not recognize that transmission can occur during the breastfeeding period despite being enrolled in PMTCT. Even higher proportions did not realize that transmission can occur during pregnancy and delivery. Compared to data from the Tanzania HIV Malaria Indicator Survey, our mothers have lower knowledge of transmission during pregnancy and breastfeeding.¹⁵ Even though knowledge that transmission can occur during breastfeeding seems to have increased compared to an older study from Kilimanjaro,¹⁹ it is still much lower than in Lesotho, where 94% of the mothers recognized the transmission risk in the breastfeeding period.²² In Eswatini, levels of knowledge regarding transmission during breastfeeding were reported to be similar to ours. Still, the Eswatini study respondents seem to be more knowledgeable about the possibility of transmission during pregnancy and delivery.¹⁷ It is plausible to think that the failure to recognize the very real risk of transmission during breastfeeding might lead some mothers not to adhere to the recommendations.

Apart from lack of knowledge on time of transmission, nearly a third of HIV-positive women in this setting also had sub-optimal knowledge on the preventive role of ART during pregnancy and breastfeeding, the duration of ART prophylaxis for infants, and the testing schedule for exposed infants. This should be a cause for great concern at the program level. Low uptake of early infant diagnosis (EID) has been linked with low maternal knowledge of PMTCT and EID.^23–25 Compounded with these other knowledge gaps, the effect is likely to be more defaulting from the PMTCT cascade and hindrance of the success of the PMTCT program.

There is no universal way for assessing PMTCT knowledge, and there are variations in the questionnaires used in different studies, but we found 64.9% of our mothers had good knowledge. This is similar to a study in Ethiopia which found 61% of mothers had good knowledge using a similar cut off (although with fewer questions).²⁶ Studies from Malawi, Ghana, Uganda and elsewhere in Tanzania have reported lower levels of knowledge (25–35%). This discrepancy could likely be due to the spread of PMTCT messages with time, perhaps more than the differences in assessment methods.^18,19,27,28

Compared to a previous study from Dar-es-Salaam, we found a higher proportion of mothers recognized infant prophylaxis as a means for PMTCT (90.6% vs 42.7%).²⁰ However, fewer mothers in our study thought caesarean delivery could be a means for PMTCT (3.6% vs 12.5%). This could be a reflection of the emphasis that has been put on infant prophylaxis in the Option B+ era.

Misconceptions regarding infant feeding durations have also been reported in other studies. Our study found that though most mothers understood the duration of EBF, the total duration of breastfeeding for either HIV-exposed or non-exposed infants eluded them. Chaponda et al in South Africa also found mothers to be lacking in knowledge of the appropriate duration for breastfeeding.²⁰ Dunkley et al attributed the misunderstanding of the feeding recommendations to the changing recommendations over the years.¹⁴ Though we did not assess the effect of changing recommendations on child feeding practices, it is possible that it also has a role to play in our setting.

We found counselling on breastfeeding and ART to be significantly associated with having good PMTCT knowledge. This is also affirmed by an older study from Kilimanjaro, which had reported 2.3 higher odds for poor PMTCT knowledge amongst mothers who had not been counselled on breastfeeding.¹⁹ Unlike the study by Falnes however, our study did not find any significant association between PMTCT knowledge and maternal age or ANC booking.¹⁹

Overall, the level of knowledge regarding PMTCT was low, with most categories having less than 75% of mothers showing low knowledge regarding PMTCT. This is not a unique situation to our setting as low knowledge of PMTCT has previously been reported in mothers enrolled in PMTCT elsewhere.^21,30 Liyeh et al in Ethiopia found that women who attended ANC were more likely to be more knowledgeable on PMTCT.²¹ Our study has gone further to show that it is the counselling that these women receive during their visits that makes the difference in knowledge. We found that though 87.3% of mothers in our study had attended ANC more than four times during their reference pregnancies. However, not all of them had received counselling on ART and breastfeeding, the two factors that showed to be significantly associated with knowledge.

The lack of information on breastfeeding during clinic visits does not seem to be a problem that is unique to our study setting. It has also been reported in Zambia and South Africa amongst other places.^29,30 Where enhanced counselling and mentorship on breastfeeding has been tried, overall adherence and knowledge on PMTCT seem to benefit; hence this might be an avenue to explore for our clinics, especially since the link between knowledge and practice is well established.^8,31 A study in Cameroon by Egbe et al contrasted our study in that over 98% of their participant had good knowledge on PMTCT, which they attributed to the emphasis on counselling, particularly during the first ANC visit.³²

Our study was limited by not looking at how long the mothers had been in PMTCT or who provided them with the counselling during their ANC visits. However, this does not detract from the problem that our findings highlight: mothers enrolled in PMTCT still lack knowledge in key areas of PMTCT, which can lead to non-adherence to the guidelines and influence others to deviate from the guidelines. Those with children older than six months are more likely to have had more exposure to the program, but only 68% could be classified as knowledgeable on PMTCT. This leaves many questions about the mothers’ degree of exposure to health education and counselling in the program.

Conclusions

It is now 20 years since Tanzania started PMTCT services,³³ and seven years since we adopted option B+ in PMTCT. Knowledge of mothers regarding PMTCT is still not universal even amongst those in the program, who serve as ambassadors of the program and a source of information for others. This knowledge deficit involves some fundamentals of the program, such as the very real possibility of mother-to-child transmission and the need for ART during pregnancy. These could pose a threat to the success of the PMTCT program. We recommend that counselling be compulsory for all mothers, and perhaps a checklist for counselling be developed to ensure that all mothers have covered pertinent topics for PMTCT during their ANC visits. The rationale of PMTCT and participation of the mothers cannot be overemphasized in this counselling.