A total of 52 interviews were completed: 28 caregivers of infants who were offered POC birth testing, 14 health workers involved in pediatric HIV testing, and 10 policymakers.
Results are organized into six themes: knowledge about POC birth testing, experience with POC birth testing, opinions about POC birth testing, barriers and challenges to the use of POC birth testing, facilitators to the use of POC birth testing, and respondent suggestions for improving a POC birth testing program. Results are presented by theme, including responses from caregivers, health workers, and policymakers.
Knowledge about POC birth testing
Overall, respondents were accepting of birth testing and understood its benefits. Caregivers had a basic understanding of infant HIV testing, but both caregivers and health workers spoke specifically about how infant HIV testing can help children live longer. Caregivers felt that there were important advantages to HIV testing at birth, and desired testing at local facilities, in order to make it more accessible to more people. Caregivers were aware that testing could be conducted quickly, and understood the benefit of starting treatment quickly.
“I think the right time is just after birth, just like I gave birth yesterday and he got tested after birth… it will help me in taking care of him… because if I now know that for instance he got the virus, I have to take care of him.” (Mother, #02)
Caregivers stated that they got a lot of their information about HIV birth testing from the nurses in antenatal care, and for the most part, felt that they received accurate and timely information. Caregivers were very influenced by the encouragement of HIV counselors, and some likened a negative HIV test result to a “reward” for adhering to their HIV medications or other recommendations from the counselors.
“... I will say, this is a good thing to do. If you follow well what they told you to do in the
[antenatal] clinic, you are able to see… that the child can come out clean [without HIV]…” (Caregiver, #17)
Caregivers who had a positive experience felt that they would be able to share their experiences with others and could provide information and recommendations to other families.
Policymakers were very knowledgeable and enthusiastic about POC birth testing, commenting on the benefits of being able to return results to caregivers prior to discharge, and the ability to start infants on ART regiments quickly, to reduce mortality risk.
“those children who are positive … we are worried that they may die if they do not get treatment… the use of Point of Care to implement birth testing … reduces the time for sample transportation to the Lab and sample results return to the facility and been provided to the caregiver meaning that actually the mother should be able to go home knowing whether the child is HIV positive or negative…” (Policy maker, #03)
“So in terms of what is possible now which was not possible before … we are able to test and start this children on treatment on exactly the same day. From a public health perspective in the long term; we going to reduce infant mortality.” (Policy maker, #05)
Experience with POC birth testing
For most caregivers, their perception of their birth testing experience depended on the test result. Most of the caregivers who received a negative infant HIV test appreciated the rapid return; those who received a positive infant HIV test did not express a specific desire to learn the positive status more quickly. However, caregivers did understand the value of the immediate HIV test and preferred to get results (and thus be able to begin treatment) rather than have a sick child.
“It helps because as the child’s parent as your spirit is free knowing that your child is healthy. Even when the child is not, you get help and move on...” (Caregiver, #13)
“I won’t say I’m happy because the results are not yet back. So I don’t know what they will say…so if they will come back positive … I won’t keep quiet [will be upset]…” (Caregiver, #12)
Caregivers stated that they had reduced anxiety when they received results faster, as waiting for the test result was one of the difficult aspects of testing, and caused a lot of stress.
Caregivers had very mixed experiences related to family support. While most women delivered without a partner, and many without another family member, some reported having strong support systems at home. Caregivers had less anxiety and fear about birth testing if their families knew their status and were supportive, including encouraging them to adhere to medications. Those who did not have supportive or informed family members felt that a positive infant HIV birth test would have significant negative implications for them and their child.
“She [my mother] would encourage me to go to the hospital, take my treatment...and encourage me that life will continue.” (Caregiver, #03)
“It is very difficult such that even if he [the child] was positive, there is no one you can tell... even me there’s no one knowing at home that [I] am in such a situation...so it is difficult that.. I don’t see that they will ever know...it will be just my issue.” (Caregiver, #02)
Most of the caregivers seemed to understand the messaging around HIV birth testing, and credited the HIV counselors at the facilities for providing accurate and non-judgmental information. The caregivers expressed appreciation for health facility staff who were helpful and informed and they specifically commented on the staff members who took extra care to be discreet and not reveal their status or the status of their infant to others.
“No I was not scared of being discriminated because the nurse didn’t say ‘hey you…let’s go and test the child’…she called me, she called me nicely as if there is something she wants to ask on the side....even if there was a relative inside I wouldn’t be … because the nurse didn’t say ‘let’s go and check the child’s status’...now, there was no discrimination.”(Caregiver, #13)
“Yes, they were able to counsel me…Nurses were very good, they were friendly, they did not shout at me, they answered all my questions I had and I was not afraid of anything…I am happy about them.” (Caregiver, #04)
Some caregivers held the opinion that newborns seemed too small or fragile for testing because the heel-prick would be uncomfortable or painful. However, even those who said they were scared during the blood draw understood the importance of testing (even if they did not understand why a heel-prick was necessary, as opposed to say, a saliva sample). Despite understanding the birth testing procedures generally, caregivers did not understand why blood must be taken from the heel. There were a few caregivers who had negative experiences with health facility staff, and felt they were not treated well, which worsened their overall experience of testing.
Health care workers mostly reported positive experiences with POC birth testing, with the exception of the increased workload, and the exacerbation during shifts with staff shortages. Phlebotomists reported working extra hours to keep up with demand, especially where the POC platform was used both for birth testing and routine infant testing (e.g. 6 week infant virologic testing). Nurses appreciated receiving training themselves, as well as when more members of the staff were also trained, in order to provide better coverage during periods with fewer staff members working. Originally phlebotomists ran all of the tests. However, nurses specifically requested training on the platform and a change to the program was allowed, to certify nurses to run the POC machine, and this change was applauded by nurses especially for the benefits of being able to run the tests on weekends.
“We were taught well and we understood, we understood and we saw its importance. The problem [before] was staffing…” (Health care worker, #04)
Health care workers also appreciated when mothers had received counseling in antenatal care, and generally felt that the coordination across antenatal and postnatal care was smooth, and contributed to a positive experience with testing.
Policymakers were very positive and enthusiastic about the POC birth testing program. However, they had mixed experiences in training staff at health care facilities: some stated that trainings were productive and successful, while others thought the trainings were challenging, especially in the context of limited resources.
“The health workers themselves must be convinced about it and there is no way other than providing information or re-orientation of the health workers - especially the nurses - on benefits of birth testing. Once health workers believe in that, they can take full control and also convince their clientele.” (Policymaker, #02)
Policymakers stated that birth testing presents a challenge for mothers in that there is fear in knowing the HIV status of the infant. However, they did not see this as different from testing at other ages nor as a reason to not offer testing, but rather a challenge to be addressed as part of the birth testing program.
Opinions about POC birth testing
Almost all of the caregivers expressed favorable or positive opinions about birth testing, although those whose infant received a positive HIV test result expressed more mixed opinions.
Caregivers not only found the reduction in timing to be personally beneficial in reducing anxiety, but some said that they would recommend birth testing to others in the community. Those who felt that they had a positive experience wanted to share the importance of testing and encourage other mothers.
“I can tell other woman that it is very true that you can give birth to a child without HIV yet you have it……if you listened to information from the health care workers [about prevention and testing]…” (Caregiver, #10)
Health care workers were in favor of POC birth testing because they believed it was good for the health system, even though it created more work for them individually. Many stated that birth testing was needed, given that many positive infants were not identified until they were older and had more advanced disease. Health care workers were especially complimentary about POC platforms, with many stating that they were sorely needed by the health system in order to fill the high demand for testing.
“We benefit from knowing if the child is born with HIV/AIDS… So now that we are able to do birth testing, we can early identify the children that are HIV positive so they can get access to early care and treatment/ART. So they can boost their immune system and live a long life and reach pass the six weeks most children didn’t.” (Health care worker, #06)
Health care workers expressed support for national scale up of a POC birth testing program and they agreed that all health facilities would be able to handle POC birth testing, but that more staff would be required at many facilities.
“Definitely…it is more of an advantage than a disadvantage… it is really a comfort for a mother to go home knowing status for the child…it is really helping in the scourge for HIV…[and] with the management of HIV in our country…” (Health care worker, #03)
Health care workers inferred that caregivers appreciated POC birth testing and were largely in favor of the program. Only one health care worker reported a case where mother was very opposed to testing, but most found their patients to be very accepting of testing.
Overall, policymakers expressed favorable or positive opinions about POC birth testing. A few policymakers specifically expressed a desire to scale-up birth testing across the country, but noted this would require more political and economic investment.
Barriers and challenges to the use of POC birth testing
For caregivers, the largest barrier to the use of birth testing was negative family influence. If family members were unaware of their status or opposed to testing, they were less comfortable with accepting birth testing. If they were accompanied by a family member, that particular person’s knowledge of their status or opinion about testing could be a large influence, and a potential barrier.
Health care workers identified many challenges to the POC birth testing program, the primary one being the limited number of staff available to run tests. Nurses felt the extra burden, adding to an already heavy workload (especially on weekends), and some expressed their preference to have one person dedicated to birth testing alone, rather than all of the nurses trying to navigate it along with other duties. They also suggested having more POC platforms per facility, in order to meet the high demand of testing.
“The ward capacity is usually full and we even have floor beds during those times so the birth testing is taking a back seat…because it is not what we are here for…primarily we here to help mothers give birth…to monitor the progress of labour…and we under staffed a lot…” (Health care worker, #03)
“There are [a] lot of women that need to do birth testing here in [redacted name] Hospital. You see? It’s a lot. You have to do your nursing duties besides the birth testing and also do the birth testing. So you find that a lot of the children are missed.” (Health care worker, #06)
Although the test itself was free to patients, and convenient for those already in the facility for delivery, high demand led to long queues and a backlog of tests of one or two days, especially over the hours with fewer staff members to run tests. Health care workers expressed concerns that some caregivers were asked to delay discharge in order to receive test results, which they did not feel was ideal. This was particularly challenging in the case of one non-government owned facility which charged a fee for an extra “inpatient” day if discharge was delayed. This cost, or the fear of this cost, was a challenge noted by a few health care workers.
A few health care workers said they felt that the POC test still takes too long, and they are not able to accommodate all of the mothers when the facility is busy. Some noted the frustration of having machine errors and having to run a sample multiple times, further delaying the receipt of results. Many health care workers worried about losing patients to follow up if results were not available until the next day, after the patient had been discharged, noting that many of the patients did not have working phones. One health care worker also noted that the guidance for testing of preterm infants, or those transferred from other facilities after 72 hours was not clear.
“You see some mothers end up leaving their results as fathers are there to fetch them…you see they leave the results.” (Health care worker, #01)
“Sometimes you are doing this test and it is not the only woman that you will be running the test for…Some are waiting for you, they are discharged, their relatives are waiting for them outside and they do not understand what is happening, why you are delaying her. Because you tell the person that it will take an hour. After an hour that person is expecting you to come back with the results, at time you do not come with the results you come back with sad news that ‘oh no my sister your results did not come out…let us start again’ you see.”(Health care worker, #03)
Health care workers felt that the trainings were helpful, but that they simulated ideal operating situations. In reality, health care workers are challenged by more chaotic environments and sizable patient demands. They noted the challenge of health care worker turnover at a given facility, and the lack of trainings for new staff members.
“The problem was staffing…who will do this thing? … we have a lot of services …[and] we are few.” (Health care worker, #05)
Policymakers noted the challenges related to the extra burden on health facility staff, but they did not see this as much of a challenge as the health care workers themselves. They noted that there are staff shortages across the Ministry of Health, not only related to HIV services, and felt that facilities should be able to be more productive with their current staffing.
Some policymakers felt that by referring to the birth testing program as a “pilot,” it created a challenge among patients, who would not know if they could expect this service. Many felt that referring to the program as the “standard of care” would improve uptake among caregivers. Further, because the birth testing program relies on women giving birth at health facilities, a few policymakers noted the ongoing challenge to increase coverage of institutional delivery to 100%.
Facilitators to the use of POC birth testing
Caregivers benefited from and appreciated supportive counseling, especially during antenatal care. Caregivers mostly felt that the counseling was clear and understandable, and they complimented those nurses who were discreet and protected their privacy. Caregivers also indicated wanting to “please” the nurses by adhering to recommendations. Thus, a good relationship with the nurses facilitated acceptance and uptake of birth testing.
“If you are a mother who has the virus you get help the same way like everyone else… even a mother who does not have the virus yet ...she is also taught about the virus… because it happens that you end up giving birth without having the virus but when you check ...you find that you have the virus so when you go to the clinic you have knowledge it becomes easy to accept your situation that has changed...because you know, you have been taught well about the thing...about the virus.” (Caregiver, #13)
Birth testing was also facilitated if the primary caregiver’s family was supportive and aware of the mother’s status. In cases where the family already encouraged the pregnant woman to take medications, testing of the infant would be seen as a “natural” extension.
“I can say, the child’s father is supportive… he said I should agree to do everything they say [at the clinic]. When they check him [the child] we will accept every situation we face...because the child is ours so you can’t say, as I was able to accept, he is also my child I will be able to accept...He is very supportive.” (Caregiver, #16)
Caregivers felt that the accessibility of POC enabled the uptake of birth testing because the test was at the same location as the mother. Since the mothers did not have to travel and incur additional costs, they saw the benefit of a convenient test.
Health care workers felt enabled to encourage and run POC birth tests when the facility was not “chaotic.” During shifts with sufficient staff levels (generally during the daytime, during the week), health care workers were better able to carry out tests. Birth testing was also facilitated when all of the health care workers in a facility felt competent to run the tests. Preliminarily, only phlebotomists received training, but these skills did not transfer to the nurses. Once these nurses received direct POC training, they were able to carry out more tests (especially on weekends and evenings), which facilitated further uptake of testing.
Respondent suggestions for improving the POC birth testing program
Caregivers did not have specific suggestions to improve the POC birth testing program, except to make it available at more local clinics. Health care workers had a number of suggestions, most requiring more resources: they desired more platforms per facility, in order to get results back to facilities faster even when there was a backlog; they wanted more staff to be able to run tests; and they wanted more continuity between the weekday and weekend staff.
“The problem ... is the shortage of staff…you find that if the Phlebotomist is off during the weekend then the nurse who is remaining alone for the morning shift …she cannot test all the mothers …but if the staff was good enough, ... the other one can continue doing the routine activities for the ward and the other one can concentrate on the Birth Testing.” (Health care worker, #03)
“Yesterday which is Friday, they did 7 caesareans… I have to go and see the caesareans and do rounds, also here is the birth testing - so we have the challenge ... during the mid-week it’s better...the difficulties are during weekends.” (Health care worker, #04)
“We do have challenges eh… as nurses we have a challenge of being short staffed...in this program of birth testing, it is a lot of work I do not want to lie.” (Health care worker, #06)
Policymakers felt that staffing shortages were a consistent challenge, and facilities needed to improve their efficiencies and workflows to improve services given the resource and staffing constraints which were unlikely to change.
“So other facilities ,what they need to do is to have a paradigm shift and their attitudes because whenever you try to introduce a new service line the first thing they say is we under staffed…and then staffing will always be a challenge, so my view is …all other facilities need to see how best they can implement such an valuable service line with the capacity that they have at hand and integrated into their HIV testing clinic flow within the facility to see what works and to see how best to modify the clinic flow to be accommodated.” (Policy maker, #06)
Health workers stated that more education is needed for families when a child is identified as positive, in order to link them to treatment, and educate them on the importance of initiation and adherence.
Policymakers gave many suggestions, both large and small scale, for improving the POC birth testing program. Policymakers felt that it was important to introduce POC birth testing as a standard of care, rather than a pilot program, so that it was understood to be routine. There were numerous recommendations to increase the involvement of community health workers, in order to maximize their influence in the communities where they directly work.
“The Community-Rural Health Motivators, they should be vigilant, if they know that there is a child who was born at home and still not going to the clinic they should encourage the mother to go to the clinic to get services which is the BCG [vaccine] and the birth testing as well.” (Policymaker, #10)
Policymakers suggested a need for new strategies to increase communication and education to men and male partners, to inform them of the benefits of POC and infant HIV testing, and increase their responsibility in the birth testing process in general.
“I think information and education is key in this regard and the involvement of men in the care of their children so that they know the benefits, and they weigh their benefits versus not testing... the responsibility of bringing the child and ensuring the child is safe lies on both parents the women and men but however the women are usually in control even though they do not have the authority to make the decisions.” (Policymaker #02)
Many respondents recognized that when a new service is introduced, health facility staff may feel that it is an added burden, especially if they are already short staffed; a few respondents suggested instead that facilities need a “paradigm shift” toward focusing on improving skills of current staff and involving the
“whole team” from front desk to clinicians. Most respondents agreed that it was crucial to secure “buy-in” from the entire team or facility when introducing POC birth testing.
While most respondents had suggestions to improve the program, most focused on being able to serve more people even more quickly, and almost all felt that the POC birth testing program should be scaled up to the entire country.