“We Need it the Same Day”: A Qualitative Study of Caregivers and Community Members' Perspectives Toward the Use of Point-of-Care Early Infant Diagnosis : JAIDS Journal of Acquired Immune Deficiency Syndromes

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“We Need it the Same Day”: A Qualitative Study of Caregivers and Community Members' Perspectives Toward the Use of Point-of-Care Early Infant Diagnosis

Katirayi, Leila PhDa; Ochuka, Bernard MPHa; Mafaune, Haurovi MPHa; Chadambuka, Addmore MPHa; Baffour, Theresa MPHb; Sacks, Emma PhDa

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JAIDS Journal of Acquired Immune Deficiency Syndromes 84():p S49-S55, July 1, 2020. | DOI: 10.1097/QAI.0000000000002370
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Abstract

INTRODUCTION

Delays in the diagnosis and treatment of pediatric HIV have significant effects on the incidence of HIV-related morbidities and mortalities. HIV infection among children progresses rapidly, particularly for perinatal infection (acquired in utero, during delivery, or through breast milk). The mortality rate is high in the earliest months of life for untreated infants. This highlights the need for early antiretroviral therapy (ART) initiation and adherence to prevent mortality. In the absence of treatment, the mortality rate in perinatally acquired HIV infection is 20% by 3 months of age, 52% by 2 years of age, and 68% by 5 years of age.1,2 Early infant diagnosis (EID) followed by immediate ART can reduce the early infant mortality rate by 76% and the progression of HIV by 75%.3

Centralized laboratory virologic EID leads to significant delays in receipt of results by caregivers. In addition, due to long delays from the time of collecting the diagnostic sample to getting the test result to the family, initiation of ART in children with a positive test is significantly delayed, which can result in excess morbidity and mortality rates.4,5 Point-of-care (POC) nucleic acid testing technologies decentralize the EID procedure and provide the opportunity to reduce test turnaround time, improve linkage to care, reduce time to initiation of treatment, and reduce infant HIV-related morbidities and mortalities.6,7

METHODS

Study Design

This qualitative study was nested in a larger study evaluating the impact of POC EID testing on timely receipt of EID results in HIV-exposed infants (HEIs) in Kenya and Zimbabwe. The main study used a mixed-method approach to compare POC EID testing with laboratory-based standard of care (SOC), the impact study primarily aimed to determine the percentage increase in HEIs who received their 4- to 6-week EID test results by 12 weeks of age, as well as evaluate the impact of test turnaround time on linkage to care, time to initiation of treatment, and early retention in HIV care.

The objective of this qualitative study was to explore the acceptability of POC technology for infant EID by caregivers and the community. This qualitative study used a prestudy/poststudy design, collecting data both before and after the implementation of POC EID testing. In-depth interviews (IDIs) were conducted with caregivers of HEIs, and focus group discussions (FGDs) were conducted with community members residing within the catchment areas of the selected health facilities.

Study Sites

A “hub-and-spoke” model was used for implementation of the overall POC EID project. A “hub” site is a site with a high volume of patients and with an on-site POC machine, whereas “spoke” sites are sites with a lower volume of patients and that do not have an on-site POC machine but are near enough to hub sites to send their EID specimens to the hub site for processing.

The qualitative study sites were selected from the existing parent sites. Both hub-and-spoke sites were included. In Kenya, data were collected from the counties of Kakamega, Homabay, and Migori. In Zimbabwe, data were collected from the districts of Matobo, Mberengwa, Mwenezi, Filabusi, Gwanda, and Zvimba. Within the counties and districts, sites were purposively selected to intentionally include urban and rural sites and sites that included populations representative of the region (eg, in Kenya, sites were selected to include fisher folk typical of Migori). Outlier sites were excluded, for example, border sites with large migrant populations.

Study Population

IDIs were conducted with caregivers to share their opinions about their experiences and preferences with EID, as well as facilitators and barriers to uptake of testing and ART initiation. Interviews were conducted in 2 rounds: first with caregivers whose infants received an SOC EID test, before the introduction of the POC (baseline), and second, after POC EID introduction, with caregivers whose infants received a POC EID test (end line) at the selected sites. Caregivers were 18 years of age or older, spoke English or the local language, and brought the child for the EID test. The study was cross-sectional, and participants in the baseline and end line evaluations were not the same individuals. FGDs were conducted with community members and leaders to learn more about the perceptions of, facilitators of, and barriers to EID testing. See Table 1 for the data collection method and the sample size.

T1
TABLE 1.:
Data Collection Method and Sample Size

Data Collection

Recruitment

Data were collected by Elizabeth Glaser Pediatric AIDS Foundation–trained and Elizabeth Glaser Pediatric AIDS Foundation–employed research assistants (RAs). IDI participants were selected through convenience and purposive sampling. For baseline evaluations, caregivers who came with the child for an EID test and who were 18 years of age or older were identified by health care workers (HCWs) at the study sites and referred to the onsite RAs to learn more about the study. For end line evaluations, caregivers were selected by HCWs in the order of those who had received the most recent POC test. The study team notified each health facility about when RAs would be onsite, and the HCWs called and invited the identified caregivers to return and participate in the study on a specified day/time. IDIs were approximately 30–40 minutes long, were conducted one-on-one, with 1 RA and 1 caregiver, and took place at the health facility. Because of the fact that participants were often asked to return to the facility for the interview, the study team provided all participants with $5 USD to help cover any additional travel costs incurred.

Community health workers (CHWs) were responsible for recruiting FGD participants. Community health workers identified participants and informed them of the day/time of the FGD. FGDs were approximately 2 hours long and occurred in the community at a site selected by the CHW based on convenience of the study participants. A moderator and note-taker facilitated the FGDs.

In Kenya, data were collected in the local languages of Kiswahili and Dholuo or in English. In Zimbabwe, data were collected in Shona or Ndebele. All study participants voluntarily agreed to participate and provided written informed consent before data collection. All IDIs and FGDs were audio-recorded with the consent of participants. Ethical approval was received from the Medical Research Council of Zimbabwe (MRCZ), Kenyatta National Hospital, University of Nairobi (KNH-UoN), and Advarra IRB (previously Chesapeake IRB) in the United States.

Data Analysis

Audio recordings were simultaneously transcribed and translated to English by the RAs who conducted the interviews. Participants did not use their own names and were assigned a participant number. Audio recordings were compared with the transcripts by the study co-ordinator to ensure accurate translation. Translated transcripts were reviewed throughout the data collection period by the qualitative lead to ensure adequate probing and identify any new topics arising in the data that should be explored.

The analysis used an inductive approach. A preliminary code list representative of the findings was developed by the qualitative lead using a combination of a priori and emergent codes. The code list was shared for discussion and feedback among the Zimbabwe and Kenya data collection teams. Related codes were grouped into over-arching themes. The code list was revised several times because additional themes emerged during data analysis. Data were coded by 2 RAs, with supervision from the qualitative lead. Data were analyzed by the country and by whether the site was a hub-or-spoke site. Data for each code were analyzed by the study population, after exporting to a Word document and generating a code report. Findings in the code reports were summarized by the study population and in data reduction and summary matrices. Data matrices were reviewed to identify overarching themes and critical findings.

RESULTS

In Zimbabwe, baseline data were collected from November to December 2017, and end line data were collected from February to April 2019. In Kenya, baseline data were collected from July to August 2018, and end line data were collected from March to April 2019.

Among the baseline and end line IDI participants in both countries, the caregiver was almost always the mother with their mean age ranging from 27 to 32 years. For the FGDs (only conducted at end line), the mean age for caregivers was 31.5 years and 35.1 years in Kenya and Zimbabwe, respectively. Community elders who participated in the FGDs at end line had a mean age of 55.5 years in Zimbabwe and 52.1 years in Kenya. At end line, about 5% of caregivers in Zimbabwe reported not testing their child, compared with nearly 30% in Kenya. Similarly, only 9% of Zimbabwean caregivers reporting HIV testing of their child did not return for the result, compared with 27% in Kenya.

The qualitative study explored many topics and issues surrounding EID and POC. There were not many changes between baseline and end line regarding EID knowledge, practices, and perceptions. The study team has hypothesized that this was most likely due to the fact that no information about EID was shared with the community or facility attendees surrounding the introduction of the POC machine. Therefore, there was not much opportunity to shift attitudes or behaviors regarding EID. Community members were included in the study with the expectation that information about POC would trickle into the community, providing an opportunity for the study team to explore community perceptions about the POC machine. However, the results showed that information about the POC machine was not commonly discussed in the community, highlighting the knowledge gap between facility attendees and community members.

In reviewing the results, the study team found that a more interesting comparison was between the community and caregivers accessing the health facility. Although it would be expected that there would be some transfer of knowledge from the community members attending the facility to the community in general, we found that the knowledge gap to be substantial, highlighting a strong need for more community education and sensitization to the benefits of EID. Therefore, the results are organized by caregivers and community members. The findings have been organized under 5 broad themes: perspectives toward EID testing, returning for repeat testing, knowledge of the POC machine, perceptions of POC testing, and trusting the POC results.

Perspectives Toward EID Testing

In both Kenya and Zimbabwe, EID is commonly considered by facility caregivers and community members as necessary. This perspective was found at baseline and at end line. Caregivers were motivated to test their infants because of their own HIV-positive status and relied heavily on the stepwise instructions and advice from HCWs. Most facility caregivers reported that it was important to test the child to know their HIV status and to know how to properly care for the child.

“I see the test conducted as a good thing since knowing the baby's status enables one to know how to care for the baby correctly according to the needs.” (Kenya, IDI, spoke)

A few facility caregivers reported no hesitancy with testing their infant for HIV despite being nervous about the outcome of the test.

“It was important I wanted to know the status of my child, whether she was HIV-positive or HIV-negative… I didn't know how I was going to take care of her in case she tests positive.” (Zimbabwe, IDI, hub)

There were differences between facility caregivers and community members regarding their perspectives on HIV testing. Community members were much more reluctant to test the child because of concerns about an HIV-positive test result, challenges about caring for an HIV-positive child, and concerns that the HIV-positive child would experience HIV-related stigma and discrimination.

“I think it affects testing in this way, for example if I'm HIV-positive, I wouldn't like my child to be positive, so it makes me not take my child for test… This makes testing a problem since we do not want to hear that they are infected.” (Kenya, FGD, elderly male)

Returning for Repeat Testing

Caregiver motivation to bring the child back for repeat testing was high at baseline and at end line in both countries. Most facility caregivers acknowledged the importance of repeat testing and their intention to bring the child for repeat testing because of the risk of transmission during breastfeeding.

“I will come back to make sure that with the medicine I was given to give the child as prophylaxis and breastfeeding, my child did not get the HIV virus from breastfeeding.” (Zimbabwe, IDI, spoke)

Similarly, the importance of repeat testing was reported by community members in both countries. Although most community members reported that repeat testing was important and common among caregivers, a few explained that some caregivers may fail to return for repeat testing, particularly following a negative result.

“The reason for not returning maybe that I would see my baby growing well without any problem then I would tell myself that my baby was tested and tested negative and is growing well, then there I is no need to go for another test.” (Zimbabwe, FGD, elderly female)

This perspective was more frequently reported by community members in Kenya. Many FGD participants shared that caregivers do not see the importance of retesting negative EID results.

“The caregivers would not return to the clinic once they are told the child is negative. They see no use going back as the child is already negative.” (Kenya, FGD, male with child)

Knowledge of the POC Machine in the Community

In general, community members had a lower knowledge about the POC machine than facility caregivers. Particularly, in Kenya, many community members were not aware that POC testing had been rolled out and some were first hearing about POC HIV testing at the FGD.

“I have not heard anyone talking about it [POC machine], maybe there are people who have heard about it in the community but are just quiet on that information.” (Kenya, FGD, female with child)

In Zimbabwe, efforts had been made by HCWs and community leaders to disseminate information about POC testing in the community. Meetings were held with caregivers and community members to announce the rollout and benefits of POC testing.

“What happens is that when we get the machines, all people are called to be told that we have received the machine that will help us like this and like that and how they work. They will then be aware and keep reminding each other and encouraging people to go for testing because they would have known that the machines are now available.” (Zimbabwe, FGD, elderly female)

EID sensitization activities in the community in Zimbabwe had improved knowledge and acceptance of EID; however, barriers to uptake (stigma and fear of test results) still remained.

“People are aware of the options for infant HIV testing, but they need more education as they feel ashamed and, at times, having an “I-don't-care” attitude.” (Zimbabwe, FGD, female with child)

Perceptions of POC Testing

Most facility caregivers and community members appreciated the ability to receive same-day results. Both facility caregivers and community members reported that POC testing greatly reduced the anxiety of caregivers because of decreased waiting time for results. Several caregivers expressed that waiting at home for weeks or months for the test results created considerable anxiety. With POC testing, the number of days they had to wait for test results was shortened or they could even return home with the results on the same day the test was conducted.

“I felt happy comparing with the previous test for the other child. With the previous test I waited for too long and was worried that the results of my baby would come out positive. What made me feel happy is that this time the results came out immediately.” (Zimbabwe, IDI, hub)

Some community members reported that they would not return for results if they do not receive the results on the same day. They expressed that it will be difficult for them to muster up the courage again to return to the facility to know about the child's status.

“Why should you come back to pick more stress? I am sure if I do not go with the results on the same day and am required to come back on a certain date, believe you me I will not come back for the results.” (Kenya, FGD, woman with child)

Transportation cost was a challenge raised by several facility caregivers and community members in both countries. Community elders discussed the benefit of receiving test results the same day to avoid additional travel costs returning to the facility.

“There are poverty challenges and you want the mother to come after three days, you see you are burdening her? We need it the same day so that the mother goes home happy and she will tell the others that if you go there you will get the results.” (Kenya, FGD, elderly man)

“We live in resettlement areas and we get money only once per year. Sometimes you are booked for review, but money is a problem. Like these days, money is a problem to everyone. You might be willing to come but money for transport might be the barrier.” (Zimbabwe, IDI, spoke)

In addition, participants in both FGDs and IDIs reported that receiving test results the day the test is conducted can facilitate early initiation of ART if the child was infected.

“If the result is given back fast, for infants who have been infected, they could get initiated on the drugs as soon as possible to improve his/her life and better if it is the same day so as to avoid costs of going back and forth.” (Kenya, FGD, male with child)

Trust in the Accuracy of the POC Machine

Many caregivers and community members reported having more trust in POC results because they received the results printed on a slip, as opposed to it being handwritten or communicated through a phone call.

“When they test your baby, they show you the results on a paper as compared to the dry blood sample previous procedure, when they would tell you the results without seeing where they are written.” (Zimbabwe, IDI, spoke)

Caregivers felt that the decrease in processing time reduced the chance of human error and sample mix-up.

“I trust the results because as I witnessed the process, they drew blood from the baby, placed it in tube, indicated his ID and proceeded to test it. I cannot have different thought about the process as I was a witness. There was no possibility that the samples could be interchanged.” (Kenya, IDI, hub)

In both Kenya and Zimbabwe, community members expressed their confidence in the accuracy of the POC test, reporting that receiving results immediately after testing indicated that they could be trusted.

“If they come early [results] it is a sign that they are true results.” (Zimbabwe, FGD, male with child)

A few facility caregivers and community members believed the reduced waiting time for the results implied that the analyses were conducted hurriedly and so there could be errors.

“Some do not trust them if they come early as they will be thinking that they were not properly processed.” (Zimbabwe, FGD, female with child)

Concerns about test accuracy led to a few facility caregivers to seek out additional tests at other sites.

“I wouldn’t fail to trust [a HIV test result] since it took three days, the one not to trust is where sisters' tests at the facility and receive the results immediately, and [she] would go to another facility for the same test.” (Kenya, spoke, IDI)

Community members added that it was common for some caregivers to seek a second or third opinion at other facilities because of their mistrust in the test result.

“The reason why I end up repeating the test is that sometimes you hear that the machine is down you have to wait a bit, we have no electricity and so on. You may then doubt the results from a machine which previously had been referred to as not working well when it's time to get the results. You will not be sure the test would have been conducted or not.” (Zimbabwe, FGD, male with child)

Among some caregivers, distrust of POC results stemmed from low confidence in the local health facilities. In both Kenya and Zimbabwe, there were beliefs that testing and services provided at lower-level health facilities, such as health centers and dispensaries, could not be trusted as much as those provided at higher-level health facilities. A few community members explained that some caregivers would rather trust the test results received from the facilities in the capital cities.

“People in the community have a preference for larger health facilities rather than the dispensaries and the health centers. Someone could test positive at Thimlich dispensary and then travel all the way here to Macalder SCH and get another test over here just because they don't trust the dispensaries.” (Kenya, FGD, male with child)

“I say we have such people - they may not be too sure of the machine. They say this machine is not working well. They despise the testing method. They say it is good to go to a higher-level facility.” (Zimbabwe, FGD, male with child)

In Kenya, 1 community elder further explained that distrust resulted from some cases of HIV misdiagnosis in the community.

“Also, there have been cases of people being misdiagnosed and initiated on ARTs, such cases further increase the doubt in the community.” (Kenya, FGD, male with child)

DISCUSSION

The objective of this qualitative study was to explore the acceptability of receiving EID results through the POC machine among caregivers and the community. The findings show that caregivers accepted receiving results through the POC machine platform; however, there were some concerns about trusting the machine that need to be addressed. Trust issues were mostly present among community members, who were considerably less knowledgeable about EID in general.

Caregivers valued the ability to promptly receive their child's HIV test result and skip a long anxiety-induced period of worrying that their child was HIV-positive. Previous research has found that caregivers waiting for the results suffer from being unable to sleep, feeling nervous, and asking themselves many questions about the possibilities.8 Adeniyi et al8 found that most caregivers waiting for the test result believed that the result would be positive.

Previous research has documented the preference for receiving results with a POC test, including a quantitative study in Durban, South Africa which found that 92% of mothers preferred POC testing because of receiving the test result the same day.9 The same study found that HCWs were generally supportive of POC testing because they believed it is less stressful for the mother to receive the results on the same day and it allowed an HIV-positive child to be initiated on ART sooner. Our study participants also valued the opportunity to learn the child's HIV status and initiate an infected child on ART immediately. Previous research has demonstrated a significant reduction in the amount of time to initiate ART with POC compared with SOC testing.10–12

Although most caregivers were appreciative of earlier receipt of their child's test result, many also reported having more trust in results generated by POC testing. Participants commented on their preference to receive a printed-out result slip, as opposed to a hand-written result or a phone call because they felt this reduced the chance of human error. Previous research in Cape Town, South Africa, found that providers also preferred the ability to print out a slip with the HIV test result.13 Participants also valued being present at the facility while the results were processed; they felt that the reduced time to process the test decreased the chance of specimen or result mix-up.

However, given that the patients were accustomed to results taking much longer, the quick turnaround time for results caused some to question the accuracy of POC test results. Some community members commented that they would do a second test to confirm results received from a quick test and others worried that a machine may break down or the results could be affected by power outages.

Our results also highlighted that information shared at the health facility is not reaching the community and greater efforts are needed to ensure that the community is aware of new developments at the health facility. Some community members still struggled with the fear of an HIV-positive result, how they would care for an HIV-positive child, and how the child would be treated by the society. Several community members in both countries stated that this fear would be enough to discourage them from accessing care. Previous research has discussed how fear of an infant's HIV-positive test result is tied to shame, guilt, and self-blame.8 In addition, one's personal experience of living with HIV and dealing with community-based stigma may discourage caregivers from engaging their child in HIV testing and treatment.

Although those using the health facility were well aware of the importance of repeat testing, some community members were unaware of the need to return for a repeat HIV test once the child had an initial negative test. Community members may not have been aware of the risk of HIV transmission throughout the breastfeeding period or fear of an HIV-positive result could deter them from seeking repeat tests required throughout the breastfeeding period. Previous research has found that many HIV-positive people do not disclose an HIV-positive result to those outside their immediate family out of fear of stigma and isolation;14 therefore, it is possible that minimal information about what is learned at the facility is shared within the community. More efforts are to be taken to educate the community and ensure that they are aware of the need to retest the child so that they can better support and inform caregivers.

In addition to lack of knowledge regarding EID within the community, many community members had not learned about POC testing. In situations where community members had learned about POC testing, they were enthusiastic and supportive of POC test availability. It raises the question of whether more women in the community would engage in EID and return for repeat testing if they were aware of POC testing availability.

Limitations include that only facility caregivers currently using the system were interviewed and those who may have dropped out of care and/or may have had challenges with EID were not sought out. Another bias may have been in community HCWs' selection of FGD participants, who may have selected friends or individuals they believe would provide more desirable answers.

CONCLUSION

Considering the high early mortality of children who do not receive treatment in the first year of life,1 POC testing offers a unique opportunity to significantly improve outcomes of HIV-infected infants. Receiving results through the POC platform is generally accepted, although additional information sharing is needed to address concerns about trusting the results.

ACKNOWLEDGMENTS

The authors thank the study participants for sharing their perspectives and all of the facility and study staff that made this study possible.

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Keywords:

early infant diagnosis; point of care testing; HIV/AIDS; HIV-exposed infants; sub-Saharan Africa; qualitative

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