Participant demographic characteristics are summarized in Table 1. The age of the focus group participants ranged from 10 to 20 years. Two focus groups comprised of older adolescents (i.e., aged 15 to 20 years) while the remaining two consisted of younger adolescents (i.e., aged 10 to 14 years) and older adolescents. Focus group participants included adolescents who acquired HIV vertically (40.6%) and horizontally (53%). The median age of the ECs and KIs were 35.5 and 36.5, respectively.
Table 1. Demographic characteristics of participants
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Adolescents living with HIV
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Expert Clientsa
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Key Informantsb
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Number of Participants
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32 (7 – 10 per focus group)
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20
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12
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Age range (median)
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10 – 20 (15)
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22 – 43 (35.5)
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25 – 48 (36.5)
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Sex (%)
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Female (53.1)
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Female (80)
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Female (66.7)
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a. 16 ECs were facility-based (worked primarily in a health facility), 3 were community-based (worked primarily in community settings), and 1 was community- and facility-based
b. 7 were nurses, 3 were program coordinators, and 2 were program managers
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Roles and responsibilities of expert clients
In the context of adolescent-specific service delivery, adherence support was considered paramount to the roles and responsibilities of ECs. Adherence support consisted of counseling, education, follow-up visits, and pill counts (i.e., monitoring adherence by calculating the number of pills taken since the last refill appointment). One EC referred to this type of work as client tracking, which was defined as “checking whether clients come to the health center at the right time and they have correct adherence.” Community-based ECs were primarily responsible for tracking clients who have missed a clinic appointment within seven to ninety days (i.e., defaulters) or over ninety days (i.e., lost to follow-up) by visiting their homes and, if reached, encouraging them to resume treatment and attend their appointments. On the other hand, facility-based ECs performed all of their work within a health facility, which included conducting counseling sessions and pill counts, following up with patients via phone call, and documenting patient information. Facility-based clients would refer defaulters to community-based ECs for home-based follow-up. Community-based ECs would also consult with other community health workers (e.g., rural health motivators) to locate defaulters or clients that were lost to follow-up. When participants were asked about the most important role of ECs in promoting the health of ALHIV, many agreed that EC support as role models and adherence supporters were pivotal in their work among this age group.
“I always ask for the names of defaulters from the [facility-based] expert client, talk to the adolescents’ parents and find out why they are defaulting. I normally choose a time when I know that the adolescent will also be at home so that I can converse with both the parent and the adolescent if the adolescent is still young. I speak directly to the older adolescents and remind them that their date has passed but they failed to fetch their medication [and] then they remember and go to the health facility” (community-based EC, female, age 37)
Psychosocial support is another major component of the roles among ECs in serving ALHIV. As proposed by the participants, psychosocial support for seropositive adolescents may involve helping them navigate the unique psychosocial challenges they face such as orphanhood, suicide ideation, abuse, neglect, poverty, and stigma. Most participants agreed that ECs provided the same services to adolescents as they did for adults, but with a different approach. Participants stated that ECs have to approach adolescent-specific care with more patience, sensitivity, and attentiveness. Table 2 details the specific responsibilities of ECs which were derived from the interviews and are organized by Pettitt and colleagues’ (2013) categorical constructs.
Table 2. Description of services provided to ALHIV by ECs
Pettitt et al.’s (2013) Categorical Constructs
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Scope of Responsibilities among Expert Clients
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Clinical care
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Vital signs, pill counts, track defaulters, monitor viral load and CD4 count, appointment reminders, weight checks, patient filing and documentation, telephone follow-up, TB sputum collection*
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Nutritional care
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Nutrition education*, food provision*
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HIV drug access and availability
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Confirm receipt of drug refills
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Sexual and reproductive health
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Distribute condoms*, sex education*
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Psychosocial support
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Adherence counselling, HIV disclosure counselling, home visits, coping and life skills
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Resources
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HIV education, referrals
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Advocacy
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Liaisons between ALHIV and professional healthcare staff
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Transition of care
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Facilitate the transition of health services (e.g., pediatric to adult services)
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*ECs have varying degrees of skills, training, and/or resources to perform these tasks
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Recommendations
Training in adolescent developmental, sexual, and reproductive needs
Growth and development training was frequently recommended by KIs and ECs for improving EC communication with adolescents at varying stages of development. Another common suggestion among KIs and ECs was the need for ECs to obtain more training, education, and resources pertaining to the sexual and reproductive health (SRH) needs of ALHIV. One KI participant suggested that ECs provide minimal education on family planning and SRH issues because “their main focus is on the adherence piece.” One adolescent desired to be educated on “behaviors that [would] prevent the spread of HIV and protect others.” As one KI suggested, sexual debut may occur as early as 12 years of age in Eswatini, thus requiring early conversations about SRH among ALHIV. However, several KIs and ECs suggested that some ECs are not equipped to handle SRH issues and are unable to provide condoms or information on family planning:
“We do not have a family planning section or condoms [in this facility] yet we do have adolescents who are already engaged in sexual intercourse; instead we refer the adolescents to places which we are not even sure if the adolescents really go” (facility-based EC, female, age 32).
“We need to train [ECs] on sexual [and] reproductive health because we also want to reduce teenage pregnancy amongst the adolescents living with HIV and we have seen that they do get pregnant and they do change partners as well. So we need to empower the expert clients also with SRH information” (program coordinator, female, age 29).
Training to enhance clinical knowledge and skills
EC and KI participants identified the importance of augmenting the clinical expertise of ECs. Although ECs are trained to collect sputum cultures for tuberculosis (TB) screenings, others desired more skills in the following areas to enhance their role: more frequent refresher trainings, more information regarding antiretroviral drug regimens, collection of vital signs, mid-upper arm mid-upper arm circumference (MUAC) measurements to assess nutrition status, education on cervical cancer risks, technological skills, a better understanding of plasma markers pertinent to HIV patients (i.e., HIV viral load and CD4 T-cell measurements), and sign language to improve communication with ALHIV with hearing impairments. KI and EC participants recommended more EC collaboration with nurses and community health workers (i.e., rural health motivators). KI participants also recommended more supervision and evaluation of the work of ECs.
One nurse recommended time-efficient coordination efforts between clinicians and ECs with regard to TB testing by suggesting that ECs perform sputum collection while patients are queuing for their appointments to accelerate physician and nursing assessments. She also suggested for ECs to receive training on HIV testing so that they may test entire household members for HIV during routine home visits, and therefore make progress towards the country’s goal of achieving the 90-90-90 targets[1]:
“As health workers, we promote that if you go to a homestead, even if I’m going to see a gogo [meaning grandmother] who has cancer, they have to assess the whole family. Are they tested for HIV? You remember 90-90-90, so we want all HIV-positive patients to know their status and we want them to be on ART and suppressed. So now if we send an expert client to a homestead, just to see, ‘Ah, is my patient still in care, what happened, they didn’t come to the clinic,’ and then you see, you know, ten people [are] in the homestead and they don’t even know their statuses. So, maybe if we can improve that, it would be better” (nurse, female, age 30).
Additional work equipment and compensation
Participants recommended equipment and other resources that would facilitate EC-delivered services for adolescents such as computers, private consultation rooms, and incentives. KI and EC participants recommended higher compensation for ECs that is commensurate with their workload. Participants from all groups recommended teaching aids (e.g., videos, posters, pamphlets) to guide their educational sessions. ECs were also in need of phone credit (i.e., airtime) in order to follow up with adolescents via phone call or text message on their personal cell phones. One EC suggested a transportation allowance for home visits since many of them do not have cars:
“Apparently [community-based ECs] walk to the homestead[s]… but that would limit the number of patients seen per day. So even the quality of the work [they do] would be compromised” (nurse, female, age 30).
Several participants wished that some of the adolescents’ basic needs (e.g., food, clothing, toiletries) could be met through EC services. Although some ECs were able to provide adolescents with food, many of them lacked adequate resources to provide these necessities:
“Some of the adolescents come [to Teen Club] with say torn shoes or the only reason why they attend the Teen Clubs is [for] the free lunch which means that they do not benefit anything from the activities due to hunger and it hurts me when I cannot do anything to help them. I’m hoping that there will come a point when organizations will come and we will register the underprivileged and offer whichever assistance or even feed these adolescents” (facility-based EC, male, age 22).
“I would like to get some assistance from government and other organizations because some of these adolescents don’t have basic needs like shelter, food, and clothing, and there is a lot of them that are still being discriminated and stigmatized. This is as a result of that they don’t have parents at times and nobody cares when they are home, yes they do play with other children but it affects them when they play with kids who can wear nice clothes and they don’t have, it affects them psychologically, in total I can say they are orphans” (nurse, male, age 34).
“I think so far the [ECs] are providing us with all the necessary help that we need but… we are from different homesteads with different challenges; for instance, as girls we need some sanitary pads and you find that we can’t afford them so I was thinking that maybe if the [ECs] could provide us with pads maybe every month that could help a lot” (focus group participant).
It was suggested that psychosocial support, while a key role among ECs, is another aspect of service delivery that may be improved. Some recommended that ECs should acquire more knowledge and skills around behavior management and counseling. Adolescents suggested that they would benefit from more adherence support provided by ECs via counseling and reminders. A few participants across all groups suggested more counseling sessions, follow-ups, and home visits as a mechanism for enhancing psychosocial support provided to ALHIV by ECs:
“I think [the ECs] should have ample time and sit the adolescent[s] down and find out as to how is their lives at home… because I believe there are so many adolescents who can actually voice out that their home situation is not good” (focus group participant).
Additionally, there are other supplies that ECs may need to improve the involvement of adolescents in Teen Clubs such as equipment for recreational activities:
“Our main challenge is that we do not have enough equipment [at Teen Club] so we sometimes have to come up with games from nowhere” (focus group participant).
“The games [the adolescents] play are not enough, I think they need games like soccer which means they need soccer balls [and] skipping ropes, it shouldn’t be that they play chasing games all the time, it has to change” (facility-based EC, female, age 35).
More parent and guardian engagement
Although ECs have been successful at involving some parents and guardians in their work, it was often unclear from the interviews the extent of rapport built between them. Several participants suggested for ECs to develop deeper relationships with the parents/guardians of ALHIV:
“Because an expert client is someone that the caregiver is in contact with most of the time, I think it would be critical for the expert client to also play [a] special role with the caregiver as well as the adolescent” (program coordinator, female, age 33).