1. Inadequacy of HIV service delivery and countermeasures.

Two categories were identified under this theme: health worker-related; and logistics, and infrastructure-related.

a) Health worker-related. Four sub-themes were identified under this category.

Lack of relevant training

Half of the participants had not received training in the provision of ART for pregnant and breastfeeding women. Additionally, most interviewees reported a complete lack of training or lack of refresher training in lifelong ART provision among their colleagues. Among those directly involved in providing maternal, neonatal, and child health services; most of those who had not been trained were new at the facility. Participants also mentioned that, providers who were not directly involved in providing maternal, neonatal and child health services lacked relevant PMTCT training. These included laboratory, pharmacy and store staff.

“As a supplies officer [Store assistant], I was left out when trainings on lifelong ART for HIV positive pregnant and breastfeeding women were going on. They brought these drugs and they just told me that these are lifelong ARVs” Health Provider, Hospital.

All participants underscored the importance of training more providers to build capacity for sustainable lifelong ART service provision. To address the training gaps, study participants mentioned several strategies that were being used to build provider capacity. These included: on-job training, continuous medical education (CME), and supervision and mentorship by the MOH, district health officials, and implementing partners including Mildmay Uganda and Protecting Families Against HIV/AIDS. Supervision and mentorship were being done once every three months.

“Supervision and mentorship are conducted quarterly [once in three months]. The ideal would have been every month but due to resource constraints, this is not possible” Health Provider, HCIV

Shortage of health providers and heavy workload

Some participants highlighted that there were low numbers of some providers such as counsellors and clinical officers. In those cases, midwives were overloaded as they were expected to provide counselling, and maternal, neonatal, child and health services to many female clients and their children. The clinical workload was exasperated by the numerous PMTCT paperwork. The ensuant long queues affected staff attitudes who at times became flustered, and exhausted. Eventually, clients would experience delays at clinics.

“There are usually many clients [HIV positive individuals] yet we have very few health workers. We may have just three health workers and as one is immunizing the babies, one may be filling various cards and registers while the other is examining the pregnant women and at the same time checking their cards. …… the queue may be so long and there is no way she can talk to one lady for so long” Health Provider, Hospital.

Participants noted that health facilities adopted task-shifting using expert clients and village health team members (VHTs), to overcome staff shortages and heavy workload. Task shifting was observed as being very helpful in reducing the heavy workload and patient waiting time.

“We have expert clients who are also peer mothers in the ANC clinic. They help to counsel these mothers and to follow them up. They support us a lot in caring for the mothers on lifelong ART” Health Provider, HC IV.

Inadequate counselling

All participants highlighted the importance of adequate and quality counselling to ensure lifelong ART uptake, adherence and retention in care by the women and their infants. However, many felt that the counselling offered was inadequate due to a lack of counselling training, a shortage of dedicated counsellors, and limited time to counsel women on the range of issues, amidst an overwhelming number of women who required the service.

“Counselling is not enough; the workload is too much and the counsellors are very few yet, we have bigger clinics, the PMTCT and the ART clinics. I think we have about two counsellors and the other health workers provide the counselling but it is not really conducted satisfactorily. If we don’t give the mothers continuous information, they will become reluctant.” Health Provider, Hospital.

Inadequate counselling was addressed through offering continuous (ongoing) counselling to women at every facility visit with emphasis on issues at hand.

“We offer ongoing counselling to HIV positive pregnant and breastfeeding mothers on lifelong ART every time they come back. We ask them the challenges they have met when they are at home taking the lifelong ART and then offer appropriate support.” Health Provider, HC IV.

b) Logistics, and infrastructure-related. Under this category, six sub-themes were identified.

Limited space

Limited space was a prominent challenge cited by most participants. This was mostly attributed to the increased number of women seeking services, yet different services that had been integrated into the clinic were still offered in the same space. This resulted in congestion, which compromised privacy and confidentiality. Mothers were reportedly uncomfortable receiving services in such an environment.

“The place where they get the information is open and small, near a walk-way and there are so many activities taking place, it is extremely small. So, there are so many things that might divert their attention [when counselling is going on], we don’t have any privacy” Health Provider, Hospital.

Limited space, especially for counselling was difficult to address because it was affecting all other departments and not only limited to maternal, neonatal, and child health clinics. Providers said that they continued to work in the available space but wished that government and implementing partners would set up new buildings or temporary structures like tents.

Lack of guidelines

Most participants noted that copies of PMTCT guidelines were limited. In some facilities, participants reported never seeing any lifelong ART guidelines for pregnant and breastfeeding women. Where guidelines existed, health providers kept them in their consultation rooms and shared them when need arose.

Lack of information, education and communication (IEC) materials

PMTCT IEC materials were also lacking except for a few facilities that had such information on the walls.

“Yeah, there are some posters, but they are extremely few. I have seen one, but recently, they repainted the walls and I don’t know if they have put them up again” Health Provider, Hospital.

Additionally, participants noted that facilities lacked fliers and information packs that could be provided to mothers. A few participants felt these materials could be taken home by the women to assist their understanding and to enable them share with family members especially their spouses.

“It would be good to give HIV positive mothers materials such as leaflets with lifelong ART information because it reminds the woman to take the ARVs. Additionally, if put on the table—and my husband doesn’t know that am HIV positive; when my he comes and reads it, he will get the information and will realize that there is need to test for HIV” Health Provider, HC IV.

Lack of real-time electronic data capture system

In all the health facilities, participants highlighted that lack of real-time electronic data capture system was a challenge. They reported that they recorded patients’ data in PMTCT registers and on cards which were later given to staff in the records’ section for entry. Participants emphasized that time from data capture to electronic entry depended on the volume of patients and number of record assistants available. Once the data had been electronically entered it was used to track mothers and later their babies as well.

“We record the mother’s information on paper. Thereafter, we send it to the in-charge who verifies the information captured and then takes it to the records assistants for entry into the computer”. Health Provider, HC III

Insufficient funds

Many participants indicated that limited funding hindered making of phone calls, home visits and community out reaches to follow up women and their infants who missed clinic appointments.

Follow-up and tracking of women and their exposed infants require funds for transport. We at times use bicycles but they are few and some places are far away. I wish the Ministry of Health comes to provide more funds, bicycles, and motorcycles”. Health Provider Hospital

Participants said that in addition to use of VHTs and expert clients, other strategies like health facility providers using facility and district vehicles, follow-up and track women despite the limited funding.

“We give the HIV positive women addresses of the VHTs to go and follow-up on them. The VHTs go to check whether the mother and baby are still there and why they are not coming for their clinic visits or taking the ART” Health Provider, Hospital

Stock-outs of HIV test kits, Cotrimoxazole and Nevirapine syrups

Most participants observed that health facilities occasionally faced shortage of HIV testing kits, Nevirapine and Cotrimoxazole syrups. However, it was acknowledged that at one point the shortage of testing kits was a country-wide challenge. Participants admitted that sometimes stock-outs were due to poor forecasting which was rectified by devising a mechanism for enhanced forecasting.

“We have been experiencing stock-outs for; testing kits and the syrup—baby syrup [meaning Nevirapine]”. Health Provider, HC IV

Internal re-allocation of supplies and borrowing from nearby facilities were used to address this, and at other times, dividing of drugs was done.

“We would request Nevirapine syrup from the lower-level health units which are not very busy……… It reached a moment where we had to share the Nevirapine syrup among two babies”. Health Provider, Hospital

In cases where providers were completely constrained, they would inform the implementing partners who would then bring the logistics.

2. Non-utilization of HIV services and countermeasures.

Two categories are presented: HIV-related stigma and accessibility related.

a) HIV-related stigma. Four sub-themes are presented under this category.

Non-disclosure of HIV positive status

All study participants expressed that non-disclosure of HIV positive status was a significant and common challenge. They highlighted that many HIV-positive women feared disclosing their HIV status and the women perceived it that they would be stigmatized. It was noted that some women didn’t disclose their HIV positive status to their partners since they weren’t sure of their spouses’ reaction to the HIV+ result. Of most concern to the women, was fear of negative impact on relationships.

“The man [spouse] will chase me away or run away from me, yet this is still a new marriage!” Health Provider, Hospital.

“She will then tell you, ‘ah’! Musawo [health worker] leave me alone, what if I tell him [spouse] and he tells me that am the one who brought the virus!” Another one will say, “what if he [spouse] chases me away with my child……. just leave me alone”. Actually, most of them do not tell them [spouses] about their HIV positive status and being on ART” Health Provider, Hospital.

The women ended up hiding their ARVs, missing appointments and not adhering to ART.

“The first challenge is non-disclosure of HIV positive status! Mothers were initiated on lifelong ART during ANC and post-delivery, but even after all the counselling is done, some mothers refuse to disclose the positive HIV status to their partners. This mother’s ART adherence may be affected because she may not be able to take the drugs when the husband is around. Secondly, she may fear to keep the drugs with her in the house” Health Provider, HC IV.

Denial of HIV positive results

During interviews, many participants reported that some women did not believe they were HIV-positive. Such women reportedly repeated the test at other facilities which delayed ART initiation.

“One woman said that she has been delivering all her children normally [meaning children who were HIV negative] and now we are telling her that she is HIV-positive? How comes? In other words, she doubted her HIV status” Health Provider HC III.

Fear to be followed up

Participants noted that some women did not welcome being visited or followed up in the communities where they lived due to HIV-related stigma with some providing incorrect addresses and/or telephone numbers. Sometimes women switched off their phones. This affected follow-up and linkage to HIV community-based services.

“Yes, we try to call them, but it is hard to find them. When they get to know your telephone contact, they stop picking your calls! Sometimes, when you call them [women], they will tell you that they are busy. Others may tell you that they shifted to another place for the same services” Health Provider HC IV

Participants said that the use of ongoing counselling, expert clients and VHT support were the strategies in place to overcome non-disclosure, and denial of HIV positive results, and fear to be followed-up.

Unwillingness to be linked to other intra-facility service care points

There are established mechanisms to link women and their infants to different intra-facility service care points, however, several challenges were cited by study participants. For example, some women were unwilling to be linked for intra-facility HIV services mainly because of HIV–related stigma. Many participants reported that some women feared being seen in general HIV clinics by relatives, friends and or neighbours.

“After giving birth, the mothers are supposed to attend the EID and general HIV clinics from the other side and there are many other patients seated together there. So, some fear and are unwilling to be linked to those other clinics. They prefer to stay at the PNC clinic where they are few and receive the clinic services quickly”. Health Provider, Hospital.

To overcome this challenge providers cited various strategies. The time of follow-up within the PNC was extended at several facilities to address this lack of willingness to transfer to general HIV chronic care clinics. In four of the six facilities, women were staying in the PNC beyond the recommended six weeks after giving birth.

“Actually, we continue keeping them within the PNC clinic until the women are ready for referral/linkage to the ART clinic successfully before they deliver or after they have delivered” Health Provider, HC IV.

As another strategy, women were accompanied by either a midwife, a counsellor, an expert client, or a VHT member from one service point to another, to ensure successful linkage. For example, women would be accompanied from the ANC clinic to the infant immunization clinics or to the EID testing care point and general HIV clinic.

“Mothers who come here for their first time don’t know us or the different health service care points. I move with the mother showing her around and what is done until we reach the EID care point. There is a person responsible for EID, and then I introduce that medical worker to the mother” Health Provider, HC IV.

b) Accessibility related. Under this category, two sub-themes were identified. These were:

Large catchment areas

Some participants reported that they serve women who came from distant places to the study facilities. Facilities especially in rural areas that were close to the women didn’t offer lifelong ART services.

Lack of transport

Most HIV-positive pregnant women could not afford transport costs which impacted their ability to attend appointments.

Some women come from very far! They stay like 20 miles away from here. Such women have a challenge of transport coming here every month.” Health Provider HC IV.

To address accessibility-related challenges study participants noted that they used outreaches during which women on lifelong ART would be clinically evaluated and appropriately treated. Additionally, community members were engaged in health education and, HIV counselling and testing (HCT) which was envisaged to reduce community-related-HIV stigma. Besides, expert clients and VHTs would support the women to cope with the lifelong ART.

“We have three outreaches in a month. We have a number of landing sites where we conduct outreaches. We have our “Kizindalo” [big loud speaker] that we use to call and mobilize them. When they come, we counsel and test them. Those who test HIV positive, are counselled and enrolled into care, while those who test negative are only counselled. We use the occasion to reduce stigma tendencies through health education” Health Provider, HC IV.

However, it was noted that outreaches were expensive and time-consuming which calls for more resources and consequently result in sustainability challenges.

Furthermore, some participants reported that some female clients were given additional ARV supplies to reduce visits to clinics for collection of medication. This was anticipated to reduce on the transport costs.

“Some women who come from far are given ARVs for two months instead of one to reduce on the frequency of their clinic appointments. In addition, we have been provided with some fuel to take the ARVs and do HIV testing to the community through outreaches”. Health Provider, Hospital.

3. Suboptimal treatment adherence and countermeasures.

The categories under this theme were ART-related, and male spouse related.

a) ART-related. Two sub-themes are presented.

Fear of ART side effects

Most participants said that many women feared ART side effects, and some of which were reported to have been grave.

“She [HIV positive mother] refused ARVs claiming that she will get a skin rash or even die. At least, she would take Septrin [Cotrimoxazole] but not ART]. She [HIV positive mother] tells you that some of her relatives suffered from HIV and when they started taking ARVs, they got severe side effects and some actually passed away” Health Provider, HC III.

Preference for traditional medicines

Several study participants mentioned that some women would stop using ART and opt to use local herbs with a misconception that they would treat HIV as illustrated by the quote below;

“Some women stop taking their HIV drugs and resort ‘budomola’ meaning the local herbs used to treat HIV. Such mothers continue taking those herbs. But for us [health providers] here, we don’t support them to use those herbs because when they will give birth to HIV positive babies in the long run”. Health Provider, HC III

Participants emphasized that fear of ART side effects and preference for traditional medicines were addressed using similar strategies. These included health education, continuous group and individual counselling, and formation of family support groups (FSGs).

Participants noted that FSGs had helped significantly in addressing these challenges through peer support.

“Family support groups are helpful; when one is HIV positive, alone and gets a problem, it disturbs a lot but when one is in a group and another person mentions the very problem you are encountering, then you will realize that you are not alone. As a result, your mind is settled” Health Provider, HC III.

b) Male spouse related. Low male partner involvement in care was identified as the subtheme under this category.

Low male partner involvement in care

Low male partner involvement in care was a common finding. Participants noted that some women would even bring different men other than their partners whenever they are told to bring their spouses. This was attributed to fear for consequences of HIV positive status disclosure.

“We tell the women to come with their husbands for HIV counselling and testing, and treatment but majority don’t want. The mothers tell you that the men are busy while others are scared to come to health facilities”. Health Provider, HC III.

Some men were reported to be unsupportive during ANC, delivery and PNC. Partner support related challenges intensified after delivery especially when the woman did not disclose her HIV status.

“We have very few husbands that accompany pregnant women and my fear is that when one doesn’t have a treatment partner, there is nobody to share with the challenges they are facing. If the man is not involved, what will happen if that woman depends on the man for financial support? At first, it was the pregnancy driving the man to give money to the pregnant mother to come for ANC, now that the baby has been delivered, what will be the reason for the husband to give transport to this mother to come for ART?” Health Provider, Hospital.

There were various interventions across facilities to overcome low male involvement. In most facilities, women who came with their husbands were prioritized for health services. However, in other instances, men would actively be involved in the care that the wives received.

“Apart from health education that we provide, the men are there with us, when we are taking body weight and blood pressure; we also take theirs (the men). Inside the examination room, we also ask the husband if he is having any sickness and we give them the treatment. Moreover, after I examine the mother, I ask the spouse, [have you ever felt your baby’s heart beating from the uterus?] Then the person says no. Then I ask, “Do you wish to feel it beating?” When he agrees, I just put a foetal scope there, call him and give him instructions. When the husband hears the baby’s heart beating, you see that he is really excited” Health Provider, HC IV.

Participants reported providing health services to men such as health education, screening for, and treating common illnesses motivated the men to accompany their wives to the health facilities. In other facilities, study participants said that they didn’t prioritize those who came as couples but thanked and recognized men who had accompanied their wives. Other strategies to improve male involvement encompassed community outreach, continuous counselling, health education, use of FSGs and peer fathers/male champions.

“We realized that some of the strategies that we are using motivate men to come with their spouses for lifelong ART services. The strategies include giving health education on topics like HIV, care for pregnant and breastfeeding women, medical male circumcision, sexually transmitted infections (STIs) and non-communicable diseases. Other approaches that we use are offering men health services such as screening for STIs, non-communicable diseases like hypertension and diabetes mellitus”. Health Provider, Hospital.

One participant said that they were exploring the possibility of encouraging men to be involved in care for their spouses. He suggested that they were going to target men when they come to visit their wives in the health facility which is common in the first few hours after delivery. This would be an opportunity to encourage male involvement since most men come to check on their wives and the new-born infants.

“Normally when the woman delivers, that is when her husband comes to see or pick her and the new-born. So, we are making an attempt to see whether we can use that as a time to counsel men as well. It is an opportunity that we have, to talk to the men” Health Provider, HC IV.