Roles and responsibilities of expert clients in adolescent HIV service delivery in Eswatini: a conventional content analysis

We aimed to elucidate the specific roles and responsibilities of expert clients in service delivery among adolescents living with HIV in Eswatini, and to provide recommendations for enhancing adolescent service provision among expert clients and similar lay health workers throughout low- and middle-income countries. An exploratory qualitative descriptive methodology using conventional content analysis was used to meet our study aims. We recruited 20 expert clients and 12 key informants (programme managers, programme coordinators and nurses) to participate in semi-structured interviews, and we arranged four focus group discussions among adolescents living with HIV with seven to ten participants per focus group. Adherence counselling in clinical and community settings was considered paramount to the roles and responsibilities of expert clients with regard to adolescent-specific HIV service delivery. The following recommendations were made to enhance expert client service delivery practices among adolescents: (1) training in adolescent developmental, sexual and reproductive needs; (2) training to enhance clinical knowledge and skills; (3) additional work equipment and compensation; and d) more parent and guardian engagement in their work. While expert clients meet the needs of adolescents living with HIV in several capacities, they require additional resources, skills and training to improve their work, especially in the realm of sexual and reproductive health. Future research is needed to evaluate the impact of expert client service delivery on adolescent health outcomes.

to 91% between 2010 and 2012 (Dlamini-Simelane & Moyer, 2017). In Tanzania, expert patients performed 368 hours of nurse-related tasks each month, which is equivalent to the full-time work of nearly three nurses per month (Tenthani et al., 2012). Further, in a study evaluating linkages to care after home-based HIV testing and counselling, newly diagnosed people living with HIV were 4.9 times more likely to be linked to care within seven days of diagnosis when expert clients were involved in the linkage process (Tafuma et al., 2018).
Expert clients often work alongside nurses to facilitate Teen Clubs, peer support groups widely available for ALHIV in countries throughout sub-Saharan Africa (Midtbø et al., 2012;Agarwal et al., 2013;MacKenzie et al., 2017). A Teen Club is an adolescent-friendly service delivery group that is associated with improved retention in care and treatment adherence among ALHIV in resourcepoor settings (MacKenzie et al., 2017;McBride et al., 2019). However, little is known about the specific roles and responsibilities of ECs in promoting the health and well-being of adolescents in and outside of the Teen Club milieu. To expand the literature regarding lay-delivered HIV services for adolescents in resource-poor settings, our study aims to (1) clarify the roles and responsibilities of ECs regarding adolescent-specific HIV service provision in Eswatini, and (2) provide recommendations for enhancing the implementation of adolescent-specific service delivery practices among ECs. Given the scarcity of evidence-based lay-delivered interventions for ALHIV, an exploratory study will add to the body of knowledge regarding lay contributions to adolescent health and provide specific insights into enhancing and scaling up adolescent-specific HIV services in resource-limited settings.

Design and setting
Qualitative descriptive studies are typically used to investigate health care and nursing-related phenomena and are most suitable when more information is desired to develop or refine an intervention (Kim et al., 2017). Hence, we decided to conduct an exploratory qualitative descriptive methodology using conventional content analysis to meet our study aims. We recruited three groups to participate in our study: (1) expert clients; (2) adolescents living with HIV who were current members of the Teen Club; and (3) key informants (KIs), who included programme managers, programme coordinators and nurses. Participants were recruited from the Hhohho, Lubombo and Manzini regions of Eswatini. Expert clients and ALHIV were conveniently sampled from Teen Club sites to participate in this study, while snowball sampling was utilised to recruit KIs. Key informants and expert clients were recruited to participate in semi-structured interviews, while ALHIV participated in focus group discussions. We conducted four focus group discussions at Teen Club sites, and semi-structured interviews were conducted at a place most convenient for the participants, which was usually their workplace. Although 19 is typically the maximum age for Teen Club participation, adolescents may participate in the programme until their early twenties and we, therefore, included 20-year-olds in our focus group discussions. In addition to the 32 adolescents who participated in the study, we interviewed 12 KIs and 20 ECs.

Data collection 1
Data collection occurred between April and May 2017. All focus groups were conducted in siSwati, the language of Eswatini. Expert client and key informant participants had the option of completing the interviews in English or siSwati. Interviews in English were conducted by the first author, while siSwati interviews and focus group discussions were conducted by a Swazi research assistant (NSD) who also translated the interview guides from English to siSwati. All semi-structured interviews and focus group discussions were audio recorded and transcribed verbatim. Five research assistants (NSD, NPD, TCD, AN, and SN) transcribed the siSwati interviews and translated them to English. All siSwati transcripts were reviewed and translated in pairs by four research assistants (NPD, TCD, AN, and SN) and subsequently checked by alternate pairs to confirm accuracy. The first author transcribed the English interviews and one quarter of those transcripts were checked by the research team.
All semi-structured interviews consisted of open-ended questions to assess the roles and responsibilities of expert clients in adolescent service delivery. Participants were also asked to provide recommendations for improving EC service delivery among adolescents. During the focus group discussions, adolescents were asked open-ended questions about their interactions and experiences with expert clients, as well as their perceptions of the experts' roles and responsibilities. Key informants and expert clients also received a questionnaire comprising close-ended questions about the health services provided by ECs to ALHIV in sub-Saharan Africa. These questions were based on nine categorical constructs introduced by Pettitt and colleagues (2013). These constructs were: drug access and availability; clinical care; nutritional care; sexual and reproductive health; psychological support; social support; transition of care; resources; and advocacy. Pettitt et al. (2013) conducted a multi-country assessment to identify the specific needs of ALHIV in sub-Saharan Africa and used these categorical constructs as a guiding framework for their study. We therefore used this framework to confirm the extent to which ECs met the multifaceted needs of ALHIV in Eswatini.

Data analysis and interpretation
Data analysis was carried out by the first and second authors. NVivo 12 software was used to facilitate our conventional content analysis as recommended by Hsieh and Shannon (2005). The qualitative data were inductively coded and second-level codes were subsequently produced to meaningfully categorise our data. To ensure inter-rater reliability, two authors (CVA and GW) were responsible for coding the data, and consensus of coding was established by a cumulative kappa score of at least 0.80. To enhance the trustworthiness of our data, three study participants confirmed the relevance and accuracy of our findings from our content analysis in November 2020, a technique known as member checking (Birt et al., 2016).

Ethics approval and consent to participate
This research study was approved by Eswatini's National Health Research Review Board and the University of Pennsylvania's Institutional Review Board. Each participant was offered a consent form (if over the age of 18) or an assent form (if under the age of 18). To ensure informed consent/ assent, a member of the research team described the study to each participant prior to obtaining the participant's written consent/assent. Adolescents under the age of 18 were able to participate if at least one parent or guardian was able to provide the research team with written informed consent. Parents and guardians were contacted by expert clients and were required to provide in-person informed consent prior to their child's participation in the focus group discussions. Additional details regarding ethical procedures and approval are reported elsewhere (Ahmed et al., 2022).

Results
Participants' demographic characteristics are summarised in Table 1. The age of the focus group participants ranged from 10 to 20 years. Two focus groups comprised older adolescents (15-20 years), while the remaining two consisted of younger adolescents (10-14 years) and older adolescents (15-20 years). Focus group participants included adolescents who had acquired HIV perinatally (40.6%) and behaviourally (53%). The median age of the ECs was 35.5 years and KIs was 36.5 years.

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 expert clients. Adherence support consisted of counselling, 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, "checking whether clients come to the health centre at the right time and they have correct adherence". Community-based ECs were primarily responsible for tracking clients who had 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 found, encouraging them to resume treatment and attend their appointments. On the other hand, facility-based ECs performed all of their work at a health facility, which includes conducting counselling sessions and pill counts, following up with patients via phone calls 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 was 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, aged 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 a 16 ECs were facility-based (worked primarily in a health facility), three were community-based (worked primarily in community settings) and one was community-and facility-based b Seven were nurses, three were programme coordinators and two were programme managers

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 what the extent of the rapport built between them is. Several participants suggested for ECs to develop deeper relationships with the parents and 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 (programme coordinator, female, aged 33).

Discussion
Our research demonstrates that ECs are significant contributors to the health and well-being of ALHIV in Eswatini. In addition, our findings provide specific insights into the evolving use of LHWs pertaining to adolescent health, and therefore filling knowledge gaps regarding lay-delivered services available for ALHIV in sub-Saharan Africa. Moreover, our study offers practical recommendations for improving adolescent-specific HIV service delivery that may be applied to non-specialised health workers throughout low-to middle-income countries. Additionally, it is likely that EC services will be more crucial for sustaining treatment retention following interruptions to adolescentfriendly HIV programming due to COVID-19 (Hong et al., 2020). Particularly in Eswatini, adolescents are less likely to achieve HIV viral suppression when compared to their adult counterparts, irrespective of adherence counselling provided by lay counsellors (Jobanputra et al., 2015). However, our study suggests that ECs, by virtue of their job description, are suitable cadres of LHWs for improving adherence and retention in care among ALHIV. For instance, a cadre of peer health workers known as community adolescent treatment supporters, with similar responsibilities as ECs, were found to effectively improve treatment adherence, retention in care and psychosocial well-being among ALHIV in rural Zimbabwe (Willis et al., 2019). Therefore, future research should investigate the extent to which ECs and similar cadres of LHWs improve treatment outcomes among ALHIV in resource-poor settings. There has been much debate regarding the placement of LHWs in the larger scope of service delivery in low-to middle-income countries, given that many LHWs are not well integrated into national health systems (Schneider and Lehmann, 2010;Pallas et al., 2013;Mundeva et al., 2018). De Neve and colleagues (2017) conducted a qualitative study in four southern African countries, including Eswatini, which confirms the challenges of harmonising LHW programmes with national service delivery models. In corroboration of De Neve et al.'s study as well as other studies done in such countries (Mwai et al., 2013;Pallas et al., 2013), our research suggests that ECs need additional support, recognition, incentives and training to strengthen and sustain their work. Furthermore, ECs are in need of additional resources to carry out their job responsibilities (e.g. phone credits, recreational supplies). Hence, additional governmental and non-governmental funding and support is needed to use their work to maximum advantage. As highlighted in a qualitative study evaluating the performance of LHWs in Eswatini , higher monetary compensation may also provide ECs with an increased impetus to perform their tasks efficiently.
This study does not provide answers to the nuanced experiences that adolescents face in their communication with ECs, but this will be explored in a complementary study. Such insight may further assist researchers and policymakers with a more appropriate and reasonable plan for intervention development shaped to enhance adolescent service delivery. As task shifting begins to expand the skillset and scope of practice among ECs, it is important to consider strategies to lighten their work burden. Dlamini-Simelane and Moyer's (2017) ethnographic study confirms that while ECs have been able to take on more clinical responsibilities, the quality of care has not improved. Therefore, there is a need to consider robust strategic planning around coordinating responsibilities among professionally trained clinicians and lay personnel to avoid burnout and fragmented service provision that may inadvertently lead to inefficient time and costs spent on HIV service delivery. As suggested by Hermann and colleagues (2009), without adequate supervision and continual training of LHWs, the quality of their work may diminish.
Although adolescent-friendly HIV services are generally inadequate throughout resource-limited settings (Koon et al., 2013;Pettitt et al., 2013;James et al., 2018), the model of care ascribed to ECs may be a plausible solution to this service delivery deficit. However, addressing the SRH needs of ALHIV still remains a challenge in LMICs as well as in high-income countries (Hamzah and Hamlyn, 2018;Okawa et al., 2018;Munea et al., 2020). Adolescents in Eswatini are susceptible to gender-based violence, high fertility and early sexual debut, and yet there are limited SRH and family planning services specifically for Swazi youth . Studies conducted throughout sub-Saharan Africa confirm that ALHIV have suboptimal treatment adherence and less than 30% of Swazi adolescents are using condoms with their sexual partners, thereby increasing transmission risks among this age group (Zgambo et al., 2018; Government of the Kingdom of Eswatini, 2019). However, ECs may be able to learn from effective interventions implemented in sub-Saharan Africa to reduce sexual risk behaviours among adolescents (Jemmott et al., 2014;Pretorius et al., 2015).

Limitations
A possible study limitation is respondent bias such as acquiescence and social desirability by our participants. Although measures were put in place to keep the survey administration and focus group discussions as uniform as possible, there may be some variation in the way in which the research team administered, transcribed and/or recorded the data. Additionally, there was no back translation of the transcripts and survey instruments, thus limiting the internal validity of our findings. Due to our convenience sampling method, the results may not be transferrable to other contexts or settings. However, it is possible that these findings may be transferable within Eswatini due to its small size and the homogeneity of service delivery practices throughout the country. Furthermore, ALHIV who do not participate in Teen Clubs were excluded from study participation, which further limits the transferability of our study.

Conclusion
To our knowledge, our study is the first to explore the roles and responsibilities of ECs in the provision of adolescentspecific HIV service delivery in Eswatini. While ECs demonstrate the capacity to respond to a wide array of needs for ALHIV, there remains gaps in their services, especially within the arena of sexual and reproductive health. Further research is needed to explore the effect of EC service delivery on health outcomes among Swazi adolescents.
Acknowledgements -This research study was funded by the Fulbright US Student Program, a US Department of State programme that is sponsored by the US Government and administered by the Institute of International Education, Inc. This study was implemented under the support of University Research Co., LLC in Mbabane, Eswatini who provided transportation for data collection, printers and printing materials, computers and office space. Data analysis software was provided by the University of Pennsylvania School of Nursing.
We thank all of our study participants, and especially the people living with HIV who have generously participated and supported this research. We acknowledge the Ministry of Health's Swaziland National AIDS Programme (SNAP), especially Dr Nomthandazo Lukhele and Nompilo Gwebu, who supported the involvement of expert clients in this research. Lastly, we thank the University Research Co., LLC, especially Dr Samson Haumba, for partnering with us by providing the supplies and resources needed to conduct this research.

Notes
1. Our data are not publically available, but individuals interested in reviewing our data may contact the corresponding author. 2. In 2014, UNAIDS developed the ambitious 90-90-90 targets to achieve the following goals by 2020 -90% of people living with HIV are diagnosed, 90% of people diagnosed receive ART, and 90% of those on ART achieve viral suppression. This is a lofty treatment goal aspired to by many African countries.