Exploring adolescents and young people’s candidacy for utilising health services in a rural district, South Africa

Background: We use the ‘candidacy framework’ to describe adolescents’ and young people’s (AYP) experiences of health services in a rural KwaZulu-Natal district, South Africa. Methods: A qualitative approach was used including group discussions, in-depth and key informant interviews with a purposive sample of AYP (n = 70), community leaders (n = 15), school health teams (n = 10), and health service providers (n = 6). Results: Findings indicate tacit understanding among AYP that they are candidates for general health services. However, HIV stigma, apprehensions and misconceptions about sexual and reproductive health, and socio-cultural views which disapprove of AYP pre-marital sex undermine their candidacy for sexual and reproductive services. Conclusion: Consideration and understanding of the vulnerabilities and reasons AYP exclude themselves will inform interventions to address their health needs. AYP’s participation in the design of health services will increase their acceptability and encourage uptake of services. The Health Services for Young People (HSYP) study was conducted in the Population Intervention Programme Demographic Surveillance Area (PIPSA) of the Africa Health Research Institute (AHRI), in uMkhanyakude district, South Africa (see Fig. 1). There are approximately 27,000 AYP (10–24 years old) resident in PIPSA [23]. In this population, a high prevalence of HIV and sexually transmitted infections (STIs) has been reported among young people aged 15–24 years (chlamydia 8.1%, and herpes simplex virus-2 22,2%). HIV prevalence is higher among young women (19.0%) compared to young men (5.6%) [24]. Data for the HSYP study was collected between January and June 2017 using quantitative and qualitative methods. In this paper, we report findings from the qualitative study using COREQ, (Consolidated criteria for reporting qualitative research) a 32 item checklist for reporting qualitative research [25]. Population Intervention Programme Surveillance Area, (PIPSA), (used with permission) Africa Health Research Institute. Map of the Population Intervention Population Surveillance Area (PIPSA), boundaries in which the Africa Health Research Institute operates (in grey); the rest of Hlabisa sub-district (in light grey). The distribution of the clinics in which the study was conducted are shown in crosses, and Africa Health Research Institute in a triangle South Africa’s health system comprises the public and the private sectors, with access to private healthcare services depending on an individual’s ability to pay. While maternal and reproductive health services are free for pregnant women, children, and senior citizens, primary healthcare provision for the general population is means tested and some clients pay user-fees. The majority of patients access healthcare services through the public sector District Health System (DHS), a decentralised, government mechanism for healthcare provision within a primary health care approach [26]. In uMkhanyakude district, there are five district hospitals, 251 primary care clinics, and 17 mobile clinics servicing a population of 625,846. Doctors from all 5 hospitals visit primary care clinics at least once a month as there are no doctors allocated to the clinics. The clinic-based services are limited in their ability to conduct community outreach and, being focused on curative aspects, are often inadequate regarding prevention, health promotion and rehabilitation services [26]. Ward-based outreach teams (WBOTs), critical to South Africa’s Primary Health approach, do not exist in uMkhanyakude district. WBOTs are designed to bring prevention and health promotion services to the communities based on geographic catchment areas. Limited resources- both human resources for health and medical equipment, structural and health systems factors constrain the implementation of National Youth Friendly policies aimed to reach and address AYP’s health needs [5, 27, 28]. The HYSP study was initially presented to the Community Engagement Unit (CEU) at AHRI. The CEU serves as the community entry point and liaises between communities and AHRI to ensure that research is culturally sensitive and aligns with human rights and ethical standards. Subsequently, the study aims, and objectives were presented to the Community Advisory Board and community leaders to ensure cultural appropriateness. We used a qualitative approach to conduct group discussions (GDs), in-depth interviews (IDIs), and key informant interviews (KIIs) with AYP, community leaders, school health teams, and health service providers. Participants were recruited face to face in the schools, community and health facilities using purposive sampling. We explained the study aims and rationale during recruitment, and during the consent process. NN and SLM, researchers experienced in health and social science research (PhD and MA), provided oversight of data collection process. A team of ten fieldworkers, five males and five females, trained in social science and qualitative research methods, conducted the interviews. LSM conducted weekly debrief sessions with the fieldworkers and reviewed interview summaries and field notes in order to capture and reflect on the interview context. NN and BN attended some but not all the debrief sessions. Interview guides were piloted with 19 participants: health facility staff (n = 5), community stakeholders (n = 6), school health team (n = 2), AYP exit interviews (n = 3), accompanying parent (n = 1), and AYP (n = 2). Data obtained during the pilot were excluded from the analysis. We successfully recruited 101 participants. Table 2 shows data collection methods and the study sample. There were 10 refusals, citing lack of time (n = 8), and concerns that the study would encourage undesirable sexual behaviours among AYP (n = 2) as reasons for refusal. Data collection methods and study sample Face to face interviews using semi-structured interview guides (see Additional file 1: Study topic guide) were conducted in parallel with community spiral walks to map community resources, to understand the broader community context, and to identify the health needs of AYP. Exit interviews were conducted with AYP and caregivers (where applicable) respectively, after presenting at a health facility. Eight AYP participated in IDIs. Eight GDs were conducted among age (10-14y, 15-17y, 18-24y) and gender stratified groups of AYP (see Table 2), learners and out of school youth, and AYP across peri-urban and rural settings enabling us to capture a wide range of views with differing experiences regarding health needs, health services availability, health service utilisation and barriers to health service utilisation. Similarly, IDIs with community leaders (n = 15) and KIIs with health providers (n = 8), and school health teams (n = 6) added depth on complex socio-cultural phenomenon, barriers and health services utilisation by AYP. Pre-defined interview questions exploring the study aims and objectives covered the following topics: community issues that affect AYP, health services available for AYP, health utilisation among AYP, AYP’s health needs and barriers to health utilisation. Interviews were conducted at the participants’ homes, and at schools and health facilities. No one else was present during the interviews. Interviews, conducted in a local language isiZulu and/or in English, were audio recorded and lasted between 45 to 120 min. IDIs, GDs and KII occurred in one intensive phase of fieldwork, and it was therefore not possible to accurately assess the data for saturation prior to analysis of the translated transcripts. We did not conduct repeat interviews. We did not return the transcripts to the participants for comments. However, following initial analysis, stakeholder workshops were conducted separately with health facility staff and AYP to enable peer validation of findings and collective reflective learning. The Biomedical Research Ethics Committee, University of KwaZulu-Natal approved the study (approval number, BE472/15) and the Ethics of the London School of Hygiene and Tropical Medicine, (Ref 11,092). Written informed consent was obtained prior to data collection. For participants < 18 years in addition to obtaining their assent, their parents or a caregiver (where applicable) gave written consent. Transcribed data were translated into English and iteratively analysed for themes using content analysis. A deductive and inductive organising framework was used to organise the data and to develop codes and themes. Examples of the coding process are shown in Table 3, and the synthesis of data coding and categories in Table 4. After familiarisation with the interviews, three researchers (BN, SLM, NN) and fieldworkers conducted initial open coding independently. These were reviewed by two co-authors (JS and AD). Themes were determined by the content of the interview guides combined with an inductive development of codes as they emerged from the data [29]. BN, NN and SLM developed a working analytic framework, which was reviewed by JS and AD. Example of coding process Synthesis of data: coding and categories Once the themes were identified, connections across themes were sought through ordering and re-ordering using NVivo 10. The first author (BN) developed a codebook to reflect the themes and topics covered during the interviews. Using an iterative process, the study team revised and modified the codebook to reflect emerging themes throughout the analysis process. Differences and discrepancies were discussed until a consensus was reached. A spreadsheet was used to generate a matrix and the data including references to participants quotations were charted into the matrix. We then explored these themes with reference to the framing of candidacy. A descriptive narrative approach is used to present the findings, along with participants quotes to support and illustrate these findings. Triangulation of findings from different data sources (AYP, community leaders, health providers and school health teams), and data methods (GDs, IDIs, KIIs, community mapping) were used to increase validity of our findings. Field notes, debrief sessions, and peer reflections between the field team and authors were conducted to discuss codes and categories generated from the data. Translation of interviews from isiZulu to English was performed by the fieldworkers, checked by SLM, NN and BN, and were ultimately reviewed by the authors. An audit trail helped to validate the coding process and data analysis. In this section, we first focus on AYP contextual situation followed by their experiences in accessing health care using the candidacy lens. The main themes identified were AYP’s lives, community characteristics, and health characteristics. We then mapped our key themes into the stages of the Candidacy Framework. AYP included learners from primary and secondary schools, school dropouts, and unemployed youth. Most of them lived with their parents or relatives. Participants described the community as beset with crime, poverty, unemployment, alcohol and substance abuse. These social ills coalesce to reinforce vulnerability and risky behaviours that often lead to HIV infection and/or unplanned early parenthood and interruption of their education. While younger women often drop out of school, and must cope with unplanned pregnancies, young men dropped out of school primarily due to alcohol and substance abuse. Interviews revealed that although HIV is universally feared, behaviours that increased the risk of HIV such as unprotected sex, and having multiple partners were common. Complex sexual relationships between young women and older men often include monetary and material benefits or exploitation by older men, and increased risk to HIV. Poverty and lack of prospects for earning a living left young women vulnerable and led to exploitation by older men. A female exit interviewee (22 years) stated: It [poverty] affects females a lot because you find that if one does not have an ID [identification document], she would end up living with a guy because he provides everything for her. However, if she had an ID, she would be able to support herself. So, she may end up staying with a guy because there is no way of making a living… and she might be at risk for abuse… The interviews revealed that AYP were more likely to identify themselves as candidates for primary care services through tacit understanding, and/or through experiencing a series of health problems. The interviews indicated that many AYP delayed seeking health care until they were very ill, and the severity of symptoms became a key motivator for seeking health care. A female community member (58 years) stated: I would say young people take longer to go to the clinic…they may be sick with the virus [HIV] and not know until they get too sick and are forced to [go to] the health facility… Candidacy was also expressed through prior appointments for consultation with specialist care providers, and follow-up visits if there was no improvement after the initial visit. Exit interviews with female and male participants showed that AYP’s candidacy for HIV testing tended to be tied to antenatal care visits among females and STIs for males respectively. This view was expressed during an IDI by a community member (43 years): They only go to the clinic if they are forced to, like for example, if they are pregnant. They then have to go to the clinic and when they do it is like they are compelled to do a blood test. We found that it was usual practice for AYP to claim candidacy with multiple providers, such as traditional healers, pharmacists and private general practitioners. Younger males particularly reported consulting traditional healers for STI treatment, and later visited health facilities when their symptoms persisted. The participants discussed being embarrassed to be seen at clinics. Some of the participants preferred consulting with health facilities outside their catchment areas, where they are not known, because of privacy concerns. The lack of privacy, and stigma associated with HIV was a barrier to many AYP utilising HIV services, and GD participants (females, 18–24 years) indicated that AYP: …do not want to access their HIV treatment at the clinic because they will be seen… It is because people who are HIV-positive fear that they will become a subject of gossip ‘that you see that proud person, he is infected’… They [patients at the local health facility] are also identified by files [colour coding system used for patient files]. The file for a minor sickness, and HIV-positive person are [coded] differently…Files for HIV-positive people are pink and for minor sickness are blue…That is the reason why most of the people access their treatment at [name of facility out of the local catchment area]. Fear of stigma and potential scolding by health providers’ undermined AYP’s candidacy for HIV services. This view was often repeated by many AYP, and male GD participants (10–14 years) stated: People are afraid to collect their treatment, and they miss their dates because they fear that nurses [will] shout at them based on their health issues [HIV status] in public. Community stakeholders reiterated in their interviews the ways in which stigma acts as a barrier in health facilities. Community interviews suggested alternative ways that AYP can access HIV treatment whilst ensuring their privacy, as stated during an IDI, with a female community member (41 years): In clinics, there are numbers classifying and people who enter specific consultation rooms, because as people we are judgmental. If you enter the clinic, they will say you have this kind of disease. Other people, they don’t want to disclose. I would say if it can happen that there are places where people can collect their treatment privately, because there are people who are scared to visit clinics. We also found that AYP’s knowledge about HIV, other STIs and sexual and reproductive behaviours was patchy. There were misconceptions about the use of contraceptives and fertility which influence AYP’s uptake of the contraceptives. A female participant (22 years) stated the following during an exit interview: They say you are not allowed to use contraceptives because you won’t be able to conceive when you are ready to have a child, since the injection birth control method takes longer to leave a woman’s body… it takes longer time to return to fertility if you have been using the injection birth control method. For example, if I want to have a child this year (2017) it won’t be possible but maybe in 2018 I can be able to conceive, because it takes time for it to work its way out. In navigating the health systems, systemic factors such as distances to health facilities, transportation costs, and long waiting queues were seen as influencing AYP’s readiness to seek health care. Narratives with GD females (10–14 years) showed that: …the clinic is too far for them, about 5–6 km [about 3.7 miles] away and you have to get up at 5 am to get to the clinic by 7 am. Those who have money travel by taxis which costs them R15 [about $1.15] and a return trip is R30 [about $2.30]. If you do not have money you walk. Even so, you only get assistance in the late afternoon around 3 pm, and that means you must spend the whole day at the clinic. Although these system factors occasionally prompted AYP to seek alternative providers such as traditional healers, pharmacists and private general practitioners, the AYP ultimately returned to public health clinics. Specialised surgical, clinical, counselling, therapeutic and other services were not readily available or were limited to certain days, and participants were often referred to the district hospitals. Interviews revealed that many AYP experienced intense emotional distress and lived in an area with a high prevalence of alcohol and substance abuse, yet discussions about the provision of mental health service were limited. This was noted during GD with females (18–24 years): … we don’t have those kind of services [mental health services] here you must travel far if you want that service. Like the place where a person would go to if he abuses alcohol… in rehabs, there is no place like that here. Health services were generally perceived as inadequate and often unresponsive to their health needs, a concern noted during a GD with females (18–24 years): It is just that this clinic facility does not have medication and is overcrowded. You return home by sunset when they close because sometimes they close when you haven’t received any medical care service. For some of the participants, this was frustrating, and it meant making numerous trips to the health facilities either to collect medicine or to consult with specialist healthcare providers. AYP’s claim to services is ultimately validated by health providers’ perspectives which influenced subsequent service provision. Narratives during the interviews and the stakeholder workshops underscored a misalignment between healthcare providers’ religious beliefs and the provision of abortion services, and often revealed disapproval of contraceptive use among young unmarried women. Although adolescent girls from age 12 have the right to seek an abortion and family planning services in South Africa, the constant use of the language “killing of an innocent soul” by some healthcare providers discouraged AYP from seeking abortion services [27, 28]. Similarly, local moral dimensions which sanction premarital sex influenced healthcare provider roles in adjudicating SRH services. AYP felt that they were judged morally during antenatal care visits. Narratives during a GD with females (10–14 years) revealed: When pregnant young females visit the clinic, the nurses would ask them why they engage themselves in things that are inappropriate for their age… These views made AYP feel embarrassed and reluctant to express their problems as a female AYP (23 years) said: “young people are scared, we do not like to say I have a problem”. Strategic level factors that influence subsequent health service provision either enabled or denied AYP’s access to health care. We found that local realities, such as inadequate health staff and poorly resourced facilities, undermined provision of health services. Narratives during GD with females 18–24 noted: So, when [adjacent] communities visit this clinic, it runs out of medication. There are no emergency services … and mobile clinics do not have medication. Participants raised concerns about the organisation of health services delivery and pointed out that the lack of adequate space in health facilities and mobile clinics compromised their privacy and confidentiality. They noted that they were sometimes made to wait outside the building while waiting for a consultation because of overcrowding. These factors discouraged healthcare service utilisation among AYP. Lack of clarity in policy compounded implementation of youth-friendly services. A healthcare KII reported: Policy should indicate who is responsible for which parts of the policy for example, who is responsible for involvement of youth in the running of a youth-friendly policy in the clinic. Alternative modes of service delivery available for AYP at school through NGOs were limited to providing health education and facilitating referrals between the schools and health facilities. The referral system was implemented inconsistently, depending on individual clinics and healthcare providers’ workloads. In areas where youth friendly services are implemented, reports by AYP and healthcare providers were positive, however study participants acknowledged that their provision can be patchy and inconsistent. Healthcare providers trained to provide user-friendly services to support AYP, locally known as Youth Ambassadors, were constrained in fulfilling their roles, because of the many pressing responsibilities and priorities, a situation compounded by staff shortages and overcrowding. In these conditions, health staff often focused on ‘pushing the lines’ to consult as many patients as possible. The ‘happy hour’, an extension to operating hours designed to mainly afford AYP the opportunity to access health care, was not implemented and did not address the distances that AYP have to travel to health facilities. The safety of AYP and healthcare providers’ lives were also at risk especially in the evening because of widespread crime in the area. Despite the weaknesses and limitations, narratives with AYP suggested that they were unequivocally enthusiastic about the Youth Ambassador model, and they felt that it provided them with an outlet to talk about sexual behaviour and non-health issues.