Participants and procedures

The study participants included male and female AYLHIV (acquired vertically or horizontally) aged 15–24 years who were in care at one of the 60 RCP facilities in Homa Bay County, Kenya. AYLHIV who attended at least one clinic visit in one of the study facilities and were engaged in care between 0–12 months prior to the study were eligible for FGD participation. Eligible AYLHIV were approached during routine clinic visits and invited for participation in FGDs by Red Carpet program coordinators and adherence counsellors using a standardized recruitment script. The target recruitment was 32–40 AYLHIV for four FGDs (8–10 per FGD, stratified by age groups 15–17 and 18–24 years).

Since participants were recruited from healthcare facilities located within 8 Homa Bay sub-counties, we divided participants into 4 geographically convenient groups to conduct FGDs in proximity to their residence or healthcare service points outside of the facility. FGDs were held in the non-clinical spaces of the local healthcare facilities. The FGDs were located within confidential clinic-based spaces at four facilities in closest proximity to where participants lived. These included Marindi, Mbita, Ndhiwa, and Kendu Bay healthcare facilities. Indoor spaces with doors and comfortable seating were ensured to be private and secure prior to hosting the FGD. Additional information regarding the ethical, cultural, and scientific considerations specific to inclusivity in global research is included in the Supporting Information (S1 Fig).

During a weeklong workshop, the recruitment team and research assistants (RAs) were trained on the protocol and the FGD guide, (including translation for meaning from English to Dholuo), research ethics and on data capture. The training involved extensive time roleplaying FGDs and included probing techniques. The RAs and recruiters also signed confidentiality agreements.

Upon arrival for the FGDs, written informed consent was obtained for all enrolled participants. The demographic information and the timing of the HIV diagnosis were self-reported within an individual, anonymous questionnaire from each participant. The sex of the individual was asked in the questionnaire, and this data was reported at an aggregate level for each FGD. The designated EGPAF-trained FGD moderator or notetaker worked with illiterate participants to complete the survey verbally, as needed, and recorded the participant responses on the survey form. FGDs were conducted in the local Dholuo language, and were audio recorded on password protected tablets. Each FGD had a dedicated note-taker. Notes and audio-recordings were kept in secure locations in the field. Once the FGDs were completed, the FGD survey responses and the FGD notes were subsequently transcribed and used to generate summary field notes following each FGD. All notes and responses were translated (with accuracy checks) into English for data analysis. The principal investigator and the study coordinator reviewed each of the transcripts for completeness and accuracy. Identifiable data were not collected during the interviews; unique IDs were created for the participants and assigned at the time of the interviews. On return from the field, the encrypted and password-protected audio recordings were downloaded to and stored electronically on the study server. The notes and informed consent forms were stored separately in lockable cabinets with restricted access.

Transcripts were translated in an anonymous format by certified interpreters. RAs reviewed the transcriptions of the FGD recordings and translated them into Microsoft Word. Two RAs, under the supervision of a lead qualitative scientist, generated a code list using a combined inductive and deductive approach. Codes were identified a priori from the FGD guide while reviewing data allowed unanticipated codes to emerge. Transcripts were uploaded into the MAXQDA and coded by two RAs. The code list was updated several times, and code definitions were further refined as emergent codes arose during the coding process. Data were summarized through descriptive, text-based summaries and data display matrices. Data were analyzed by study population groups (15–17 and 18–24 age groups), comparing similarities and differences across the groups. Related codes were grouped into overarching themes. Data reduction and summary tables were created to organize the results and track the emergence of overall themes and key findings. Quotes were selected from the data to illustrate thematic findings.

Research materials can be found in the Supplemental Information (S1 Appendix).

FGD gathered participants’ opinions and perceptions in the following thematic areas: 1) HIV testing and linkage to care; 2) retention in care and adherence to treatment; 3) HIV support services (including peer counseling and peer groups); and 4) HIV status disclosure.

Ethical approval

This protocol was approved by the Kenyatta National Hospital Ethics Research Committee, Kenya, and the Chesapeake Institutional Review Board, USA. Written research consent was obtained from each participant ≥18 years of age prior to conducting FGDs. For participants aged 15–17 years, parental/guardian consent and AYLHIV assent were obtained. A waiver of parental or guardian consent was granted for mature minors 15–17 years old (married, pregnant, having children, or being a head of a household) [14].

HIV testing and linkage to care

FGD participants described that most adolescents have a general understanding of the importance of HIV testing. Most participants described the fear of receiving a positive HIV test result as a contributing factor in the general reluctance to seek HIV testing among adolescents. Other significant barriers to HIV testing identified were HIV-associated stigma and youth not wanting to be tested at the same facilities as their peers. In addition, certain testing practices were described as problematic, especially among adolescent males. One participant described how “boys test less frequently than girls” out of fear or reluctance to visit HIV testing facilities. This participant (15–17 year old, Marindi) described that when testing is made readily available at tents within the community during “market days,” boys also often avoid these public opportunities for HIV testing, indicating a preference for more discreet testing opportunities. In general, participants considered adolescent females to be more focused on the physicality of their bodies and concerned about pregnancy-related health considerations in comparison to adolescent males as a plausible contributor to their higher HIV testing rates (Table 1). One participant discussed how girls may discover rashes or other disease manifestations on their bodies and subsequently seek medical advice. Participants further described adolescent males as more nonchalant or less likely to give considerable care to any disease manifestation. Or, if adolescent males acknowledged health issues, they were described to more frequently default to self-medication alternatives, including alcohol use, rather than seeking medical care. FGD participants also discussed that while testing was sometimes offered at schools, significant concerns about privacy and confidentiality and the risks of teachers and school staff potentially disclosing their status exist among youth and frequently prevent them from accessing HIV testing.

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Table 1. AYLHIV quotes on identified themes.

https://doi.org/10.1371/journal.pone.0296786.t001

The intricacies of interpersonal relationships were also described as barriers to testing among sero-discordant and unaware of their HIV status partners, especially among HIV-positive adolescent females and their HIV-negative adolescent males’ partners who were reluctant to get tested. One participant (15–27 years, Mbita) described his experience as following: “When I realized my status, I had a boyfriend; and when I told him that I was positive, he doubted and told me that I was lying…”(Table 1). In this case, despite the adolescent woman’s awareness of her HIV status and disclosure and encouragement for her male partner to get tested for HIV, it never took place. Fear and denial of knowledge of HIV status were cited as barriers to getting tested by AYLHIV who had HIV-positive parents. One participant described an adolescent female with HIV-positive parents who refused to learn about her HIV status (Table 1).

In response to the barriers to HIV testing that were identified, the participants described a series of strategies that could potentially help with engaging adolescents in testing. Educating the community about the indications and the importance of testing for HIV was identified as an effective strategy, supported by the experience shared by one of the participants on their experience with the diagnosis of perinatally acquired HIV (Table 1).

Engaging youth in HIV testing was also described as essential to successful HIV testing. Participants highlighted the importance of establishing a general awareness of the importance of HIV testing among youth. One participant (18–24 years, Kendu Bay) suggested: “We can create outreach. If the youth know that there is free treatment given during outreach, they will come, and the outreach should have HIV testing services.” Participants also proposed promoting HIV testing among youth involved in romantic relationships. They suggested youth should engage in sexual health discussions within relationships and encourage partners to seek HIV testing. In addition, participants also suggested these sexual health dialogues could be enhanced by educational forums that described the benefits of HIV testing. Another strategy to better engage adolescent males in HIV testing centered on their interests in sports and suggested introducing a sport event or tournament whereby HIV testing was readily available. A few participants also suggested engaging adolescent males in testing by coupling it with other testing such as malaria testing, during an outbreak. Some participants felt the benefits of HIV testing should be sufficient self-motivation for adolescents to engage in testing (Table 1).

Participants also discussed how peer advocates could potentially contribute to favorable testing practices. Some suggested that using themselves as examples could increase uptake in testing behaviors. One participant (18–24 years, Kendu Bay) shared, “Being an HIV positive youth, you open up to them, telling them that you are taking HIV medication. They can listen to you and agree to get tested. During door-to-door testing, they normally hide; so, you can be open with them and convince them to get tested.” In addition to general peer support for HIV testing among all adolescents, one participant felt that peers would be particularly helpful for engaging adolescent males in testing (Table 1).

Retention in care and treatment adherence

Most FGD participants cited HIV treatment adherence barriers, such as general forgetfulness and dealing with internalized stigma associated with being the only HIV-positive person in their family. Some participants provided examples of how arriving home later than anticipated could contribute to them missing a designated dose, which would result in their decision to skip the dose altogether and then take multiple doses at once. Many participants agreed that side effects of HIV and antiretroviral treatment, including sickness, skin rashes, or skin discolorations, were potential barriers to treatment adherence. In addition, traveling and not having medication or being in an environment where people were unaware of their status also limited their ability to successfully take medication as prescribed. Furthermore, not having a reminder device, such as a phone or radio with an alarm, was also reported as a barrier to routinely adhering to treatment.

Participants cited a lack of disclosure of HIV status and not understanding the reason for treatment as an adherence barrier (Table 1). Furthermore, lack of family support, and living in shared spaces at boarding schools, and consequent fears of disclosure of HIV status among peers were cited as reasons for non-adherence. For example, participants cited the noises from pills rattling in bottles, drawing attention, and questions from peers.

In addition, selected participants noticed that having busy or conflicting schedules or competing priorities impacted their ability to attend clinical appointments. For example, asking for passes from teachers to leave class was particularly challenging for youth that had not disclosed their HIV status at school. For some, poverty was described as a barrier and not having sufficient food to eat in an effort to stifle medication side effects was related to not taking HIV medications. A few participants also described cultural practices and religious beliefs that they observed as barriers to treatment adherence (Table 1).

Participants described being educated about the Operation Triple Zero approach—zero missed appointments, zero missed treatments, and an eventual zero viral load—as the primary motivator for treatment adherence. They described striving to adhere to strict daily regimens of taking medications exactly within 24 hours and noted that strategies to reduce side effects were important (Table 1).

When considering the future HIV treatment options, many AYLHIV expressed interest in long-acting injectable HIV treatment (Table 1). Long-acting injections were also considered more confidential and less conspicuous than medication bottles as described by one participant (18–24 years, Kendu Bay): “It would be good because you are going to be injected at the facility. This will reduce the fear of taking drugs [and] the challenges we had talked about. [Such as] your friends visiting and you are afraid to take the drugs as when time reaches. The injections will eliminate such scenarios because when one goes to the hospital to get an injection, nobody will know the kind of injection you have received.”

At the same time, some participants questioned the potential ramifications of transitioning from pills to injections (Table 1). Potential implications of transitioning to injections shared by participants included the perception that individuals would be less inclined to return to the facility for supplemental treatment injections due to a misguided belief that they were now fully protected. One participant (15–17 years, Mbita) shared, “I think injection is the best, but it might bring in some laziness. You see even those going for depo, the family planning sometimes fails to go back because they now see themselves safe. It brings laziness because you’re now free. But for ARVs you can see, the container is now empty let me go and pick more drugs.” Other participants also discussed potential limitations with injections concerning the general fear sometimes associated with needles and described potential issues with participants forgetting to return to clinics for follow-up injection visits.

HIV support services

Most FGD participants felt their care experiences were generally good and that healthcare providers educated them about the treatment; however, some participants reported feeling stigmatized by healthcare providers and also expressed concerns about confidentiality while receiving their care at the healthcare facility (Table 1). They described the RCP facility nurses as polite and felt the doctors were very engaged when speaking with youth (Table 1). Storytelling and providing relatable, vivid examples were described as effective strategies used by healthcare workers to promote treatment adherence (Table 1). Some participants also noted that employing more nurses could potentially contribute to quicker service delivery. Furthermore, continuing to simplify and speed up the dispersion of ART medications was also suggested. This was further extended by discussing efforts that could potentially reduce stigma around HIV services, which included separating HIV clients from other outpatient services, changing meeting days for the adolescents to avoid the adults, and ensuring that pharmacists are readily available. Emphasis was placed on the significance of having private entrances for AYLHIV and specific days for youth services at RCP healthcare facilities (Table 1).

FGD participants positively commented on their experiences with the support of the RCP community health volunteers. Participants described RCP representatives as “good people”. Participants shared that the discussions about treatment adherence during peer support groups were especially helpful for addressing barriers to adherence (Table 1). Participants also discussed the importance of overall education on sexual health, including safer sex practices, to support retention in care. Opportunities for advanced preventative health measures, including pre-exposure prophylaxis (PrEP), for partners were also discussed within the context of relationships. One participant (18–24 years, Kendu Bay) stated: “When you are living a positive life with HIV when we go to the clinics we are told that if we have partners and sometimes they are HIV negative, we [should] use condoms during sex. There are new drugs also called PrEP [and] the person who is HIV negative can use the drugs to prevent infection especially if married.”

To improve adherence AYLHIV suggested expanding peer activities to trips and offering financial support to be provided as incentives to virally suppressed youth, as described by one participant (18–24 years, Kendu Bay): “I think they should introduce trips for those who are virally suppressed. This will encourage others to adhere to drugs in order to suppress the virus. Financial support for those still going to school, would be great, if that is possible.” AYLHIV also felt that it would be increasingly helpful if other youth were more actively involved with counseling support services.

HIV status disclosure

Several participants, who have self-identified as living with perinatally acquired HIV, discussed their experiences with parents or caregivers disclosing their HIV status to them. Those participants shared their feelings and thoughts at the time of their HIV status disclosure and cited lack of understanding of HIV, since they were not able to visually see HIV symptoms and expressed concerns about their ability to have children and their family. Participants shared that finding out about their status was occasionally connected with learning about a relative’s HIV status (i.e., a parent also living with HIV). Participants shared how disclosing caregivers helped explain how adolescents acquired HIV and talked about their future lives (Table 1). Participants also described their struggle with the notion of being the only HIV-positive person in their family (Table 1).

Following the disclosure of their HIV-positive status, participants described their experiences sharing their status most often with a close friend. However, they did not share their status with people whom they thought would spread gossip concerning their health, including certain family members as well. In addition to concerns about disclosing to family members, participants felt it was particularly important to disclose to romantic partners.

Participants also described how certain school policies impacted their HIV disclosure and access to medication. Many schools had “drug-free policies,” which also included prescription medications. These types of policies often required students to present their medication to school personnel, which forced the disclosure of their status (Table 1). Considering school disclosure, participants described how schoolmates sometimes became suspicious of their status based on the attention they received from school nurses when asked to visit administrative offices to take treatment or if they were frequently excused from classes for clinic visits.