Bottlenecks and opportunities towards achieving the targeted 95-95-95 HIV services in a rural district in Eastern Uganda

Study design

A cross-sectional study was conducted between June 2020 and May 2021 in the Bukedea district using mixed methods. The study involved reviewing the existing data from the district information system and in-depth interviews. The study population comprised of people living with HIV, the health care workers involved in HIV care and treatment and the members of the community of Bukedea District. The document review was conducted to collect the summary information on trends in HIV testing, enrolment to care and viral load suppression. In the health facility, the health care workers who were directly involved in the care and treatment of HIV were purposively selected for the key informant interviews using an exploratory qualitative research design. Semi structured face-to-face interviews with the key informants were used to collect the data. The members of the Village health team were involved in a focus group discussion and also guided the selection of the members of the community to be involved in the focus group discussions. Semi structured face-to-face interviews were used to collect the data during the focus groups.

Study area and setting

The Bukedea district is in Eastern Uganda, and is mainly inhabited by the Iteso tribe. It has a population of 203,600 people according to 2014 Census data, of which 98,684 (48.5%) are males and 104,916 (51.5%) are females, 74,533 are aged 0-9 years, 53,164 between 10-19 years, 45,151 between 20-39 years, 20,367 between 40-59 and 10,385 60 and above years. The biggest population are those under 20 years of age. 96.7% of the population stays in rural areas and 3.3% in urban areas according to the National Population and Housing Census.⁷

The study was conducted in two settings. The first was health facilities in Bukedea district and the second was the communities around the health facilities.

Sampling

We reviewed existing information on HIV testing, enrolment to care and viral suppression from the HIV registers for Bukedea Health Center IV and also analyzed information on the Bukedea district dashboard to draw the general picture of the district’s performance towards achieving the 95-95-95 WHO target.

Purposive sampling was used to select the key informant interview participants. The participants were selected based on the knowledge they had about the uptake of HIV services at Bukedea Health center IV and the district as a whole. Members of the village health team (VHTs), local leaders, and health care providers were selected to participate in this study. The participants were approached face to face with the guidance of the member of the Village Health teams. The sample size for the focus group discussions and the key informant interviews was determined by saturation, where the number was obtained after reaching a point where no new information was being gathered.

Males and females aged 15-65 years were selected for the study. The participants below 18 years were included in this study because they make a sizable population of individuals living with HIV and some of them were non adherent. The participants below 18 years provided ascent and their parents/guardians provided consent. For HIV testing, both HIV positive and negative people were selected. For HIV treatment and viral load suppression, only HIV positive people currently on ART were selected.

Data collection

The documents reviewed included the HIV testing register, enrolment to HIV care register, the viral load testing register and the district dashboard to capture the information from all the HIV care centers in Bukedea district. To assess the prevalence of HIV viral load non-suppression, we reviewed the ART register and the HIV viral load non suppressed clients’ register and analyzed the Bukedea district dashboard. The information on viral load suppression, HIV testing, adherence to treatment and the participants demographic data were collected using a data abstraction tool. The data abstraction tool contained the variables of interest of the study.

Focus groups

The focus group discussions were guided by the moderator who introduced topics for discussion to the participants who were given specific codes for identification. A total of 7 focus group discussions each consisting of 6-12 participants were conducted in the communities in Bukedea district. All the focus group discussions and the key informant interviews were audio-taped and transcribed verbatim for analysis.

The focus groups discussions involved people in the same age brackets and men and women were grouped separately. The focus groups discussions were conducted with the VHTs and the community members to collect data about the bottlenecks and the opportunities towards achieving the 95-95-95 HIV service in the Bukedea district. The key questions asked during the focus group discussions in the communities included: 1. What do you think are the obstacles that hinder the uptake of HIV testing services at Bukedea Health Center IV? 2. What could be the problem for the newly diagnosed people with HIV not being enrolled into care? 3. What factors contribute to non-adherence to treatment in your community? 4. What do you think are some of the opportunities that can be used to improve the uptake of HIV services at Bukedea Health Center IV?

Key informant interviews

Semi-structured face-to-face key informant interviews were also used to collect data from the health care workers and HIV clients. Key informants were carefully selected based on the knowledge they had about the uptake of HIV services in the community. The key informants included the health workers of the health facility for example the ART in charge, the counselor, linkage facilitator, HIV viral load suppressed and non-suppressed clients in Bukedea district. The key questions asked during the key informant interviews included; 1. What could be the problem for the newly diagnosed people with HIV not being enrolled into care?, 2. What challenges do you face when providing HIV services to the people at your health facility?, 3. What factors contribute to non-adherence to treatment in among HIV patients?, 4. What do you think are some of the opportunities that can be used to improve the uptake of HIV services at Bukedea Health Center IV?

Data quality control

This was part and parcel of the research process right from data collection to data analysis. During the focus group discussion, the moderators ensured there was equal input all the participants. The separation of the focus group participants by age group and gender minimized the influence of the power dynamics on the information collected.

The tools used for the focus group discussions and key informant interviews were pre-tested before the actual data collection to ensure data quality. Member checking was also done to ensure that accurate information was collected.

Data analysis

Thematic data analysis was used. After data collection, the data was transcribed verbatim and analyzed using NVIVO v12. Two transcribers transcribed the data; the first transcriber transcribed the data and the second transcriber read the transcripts and listened to the audios to ensure the quality of transcription. Member checking was also done to ensure that there was no information loss on transcription. Two independent coders coded the data and the codes were discussed with a wider multi-disciplinary team of 12 members. After coding, all the codes and data extracts were collated for the later stages of data analysis. Themes were identified from the coded data which involved examining the codes and collated data to identify significant broader patterns of meaning. The themes were then reviewed by checking the candidate themes to ensure that a convincing story of the data was obtained and to ensure that the data was in line with the research objectives. The themes were then named and defined by a detailed analysis of each, working out the scope and focus of each theme. The final phase of data analysis involved writing the final report. The researchers then presented the findings and interpretations of the data.

Ethical considerations

Ethical clearance was sought from the Busitema University Faculty of Health Sciences Institutional Research Board, BUFHSREC02319. Confidentiality of the respondents was ensured and numbers were used for identification during the focus group discussions. Informed consent was obtained from the respondents and this was evidenced by a signature or thumbprint on the key informant guide. The participants were told that the information obtained from them would be reported in an anonymous form and published.

Study participants

A total of 90 participants took part in the study. Of these, 48 were community members, 12 were VHTs, 3 were health care providers which included the ART in charge, linkage facilitator, and the counselor, 12 participants were viral load non suppressed patients and 15 were viral load suppressed patients. 7 focus group discussion sessions and 30 face-to-face key informant interviews were conducted. The full transcripts for this study can be found under Underlying data.¹⁸

A total of 24 community members that participated in the study were females and 24 were males, 32 of the community members were aged 20-65 years, 16 of them were aged between 18 and 20 years. The clients that participated in the study were those who had been enrolled in HIV care, 12 of them were HIV viral load suppressed clients and 15 were HIV viral load non-suppressed clients. 3 health care providers; the ART in charge, counselor, and linkage facilitator were interviewed. 12 VHTs participated in the focus group discussions.⁸ The duration of the key informant interviews was between 11 and 30 minutes with an average time of 24 minutes whereas the focus group interviews ranged between 50 minutes and 80 minutes.

HIV testing

The bottlenecks that emerged from the focus group discussions with community members and VHTs were classified as the client-related and facility-related factors. The client-related bottlenecks included; long distances to the health facility offering HIV care services, fear of disclosing their results to partners, stigma, and busy working schedules. The facility-related bottlenecks cited by the participants were bad experiences at the facility.

Stigma was commonly cited in the focus group discussions with the adolescents in the community. The stigma was mainly due to fear of their school peers knowing they are positive and also fear of starting medication:

The community members frequently mentioned that the fear of disclosing their positive HIV results to their spouses made them avoid testing for HIV. This was common among the females who feared intimidation from their husbands if they were found to be positive.

Some community members confessed that the busy working schedules they had, made them not turn up for testing because they work from the morning until the evening, as illustrated below.

Some people in the community did not test because of the long distances to the health facility. When asked about community outreach programs, they said that they were not aware of any outreach programs that take place in their villages.

The Uganda health system is organized in a hierarchical manner according to the population they serve. The National Referral Hospital serves a population of 30,000,000, the Regional Referral Hospital serves 2,000,000, the General hospital serves 500,000, the Health Center IV serves 70,000, the Health Center III serves 20,000, the Health Center II serves 5,000 and the Health Center I (Village Health Team) serves 1,000.⁹

The focus group discussions cited deterrent costs which they incur when the health facilities lack gloves and other sundries. All focus group discussions cited this challenge.

Enrollment into HIV care

The bottlenecks in enrolment to care (the second 95) were also patient-related and facility-related. The patient-related challenges were fear of disclosure to the partners, fear to take the drugs, failure to believe in the positive results. The health care providers frequently mentioned that some people who turn positive after testing refuse to get enrolled into care because of fear to disclose the information to their partners. Even the ones that start treatment often hide the drugs from their partners. Moreover, because HIV treatment is for life, some people fear starting it. The ART in-charge mentioned that, due to this fear, some patients often said that they need time to think about whether to begin taking the medication or not. Some people take more time to understand their HIV results and end up leaving the facility.

The only facility-related challenge was inadequate pre-test counseling. This was reported by the counselor. The ART in charge said that inadequate pre-test counseling was because there were many testing points and only one counselor was attached to the facility.

HIV viral load suppression

The Bukedea HCIV had 960 clients enrolled on ART at the time of this study.

There was a higher number of females attending the HIV clinic than males (Table 2). The HIV viral non suppression was higher among the adult population (26/65 years) and lower among children and young adults below 25 years of age.

The bottlenecks in HIV suppression were classified as patient-related, facility-related challenges, and medication-related challenges. The patient-related bottlenecks included stigma and discrimination, alcoholism, poor nutrition, sharing of drugs with animals and partners, gender-based violence, lack of family support, religious beliefs, multiple partners, and poor medication routine.

Patients and the health care workers frequently reported that stigma and discrimination made the patients stop taking their medication. Such patients ended up abandoning the drugs as illustrated in the quote below.

Some women with undisclosed HIV status would hide their medication in odd areas such as inside the grass in the grass thatched house where drugs sometimes get wet in the rain season for the fear of their husbands discovering them. Some of the female participants confessed keeping their medication under the cooking stones where their husbands are least expected to check and find them.

Alcoholism also came out strongly as a driver of non-adherence to the medication and hence non-suppression. Alcohol consumption was common among both men and women and in many cases, children.

From the focus group discussions in the community, there were several mentions of people sharing drugs with animals. The ARVs were given to pigs as fatteners and to chicken as a remedy for avian viral infections. Sharing ARVs was also reported to be common among spouses. Some reasons given for sharing of ARVs were; busy schedules, long lines in the health facilities and that men were afraid of being seen collecting their medication. This was frequently mentioned in the focus group discussions in the community as quoted below:

One of the key informants (the counselor) mentioned that gender-based violence greatly contributed to non-adherence. The commonly affected were the women who were abused by their husbands which caused them stress.

Some patients confessed that they missed medications simply due to forgetting to pick them up or not taking them on time. The natures of work and alcohol consumption especially among the security personnel, also often referred to as “askaris” were reported to be the common cause of skipping medication and refill appointments.

Patients reported that one of the limiting factors to taking the drugs was lack of food to take them with.

Some of the people living with HIV (PLWH) reported that they did not have support from their family members and this greatly contributed to missing medication.

The community members and the adherence counselor reported that some patients who were on ART abandoned it because their religious leaders told them that Jesus would heal them without medication.

The other medication-related challenges included the pill burden, side effects, and resistance.

Adverse effects for example nightmares, confusion, dizziness, vomiting, and rashes on the skin made some patients stop taking the medication as illustrated below from an interview with a non-suppressed client.

One of the key informants reported that there were a few cases of the regimen failure for the patients especially those on second-line treatment. Stock-outs of vacutainers, loss to follow-ups were also common occurrences at the health facility.

This graph highlights the previous WHO targets of 90-90-90. The performance of the Bukedea district was still below the WHO set previous targets (Figure 1). While the district HIV detection and enrolment rates were getting closer to the previous targets, the viral suppression rates were still much lower.

Figure 1. Progress towards the 90-90-90 global targets in the Bukedea district.

Opportunities

From the focus group discussions and key informant interviews we had with the community members, patients, VHTs, and health workers, we were able to identify several opportunities that could be utilized to achieve the targeted 95-95-95 HIV services in the Bukedea district.

Counseling was seen as one of the ways stigma would be reduced and one of the factors that would contribute to adherence to treatment. At the facility, pre-test counseling was not adequately given and this explains why some people feared starting medication. Health education about the importance of taking the medication, the ways of ensuring proper adherence to treatment, and sensitization on the dangers of alcohol consumption could be used as an opportunity to improve adherence to treatment.

Targeted testing was also identified as one of the ways of ensuring that all people living with HIV get tested. The targeted testing was done through testing the people more at risk of contracting the virus (HIV) for example the commercial sex workers, the truck drivers, the private security personnel, police officers, prisoners, and substance abusers.

Although Assisted Partner Notification (APN) was used, it was, unfortunately, limited by inadequate funding. Assisted Partner Notification ensures that all the sexual partners of a positive client are screened and tested for HIV.

Family tracking was seen as one of the ways of making sure all people living with HIV test and get to know their status (Figure 2). This involves knowing the HIV statuses of the family members of the positive client comes from because of the possibility that they could have been born with the virus.

Figure 2. Male partner testing in Bukedea District.

From our study, we found out that self-disclosure by the expert clients on ART would help reduce the fear for stigma and also make the PLWH believe that if all the instructions for taking the medication are followed, a person living with HIV can have better quality of life and viral load suppression. The expert client in this study refers to the experienced HAART clients who have achieved viral load suppression. The expert clients have been co-opted to the Ugandan health care system to help in the management of HIV, especially to champion the message of adherence to treatment.

Many people in the community said that they had not tested due to fear of being seen at the health facility while testing. We therefore saw home to home testing as one of the opportunities to make sure that all the people living with HIV know their status.

Many people were not adhering to treatment because of gender-based violence and lack of family support. Linkage to social support networks ensures that the affected people are supported emotionally and financially.

VHTs played a major role in providing counseling, ensuring that the clients in their communities keep appointments and go for refills, and also picked up refills for those who were unable to due to fear or other challenges.

One of the reasons patients gave for missing medication was forgetfulness. Setting reminders on phones for the clients who have them was seen as a way for patients to manage their medication.

One of the reasons why some people feared to be enrolled into care and also abandoned their medication was fear of disclose their positive status to the partners. We saw couple testing (Figure 3) as one of the ways of reducing the challenge because, through adequate pretest counseling, the married partners can prepare for either accordant or discordant results.

Figure 3. The 12 months’ retention to care.