HIV and TB care and treatment: patient utilization and provider perspectives in rural KwaZulu-Natal

Thesis submitted for the degree: Doctor of Philosophy, School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg June 2017.The epidemics of tuberculosis (TB) and Human Immunodeficiency Virus (HIV) in sub-Saharan Africa are closely related and particularly persistent, proving a considerable burden for healthcare provision, and complicating utilization of care. Concern has been expressed about patients’ experience at healthcare facilities as this may impact on drug adherence, treatment success and willingness to return for regular monitoring and drug pick-up. This is particularly relevant for HIV programmes, with HIV now a chronic disease, with daily treatment necessary for life; TB treatment is limited in duration, to six months although can be as long as two years in case of multiple drug resistant TB. Utilization of healthcare services is an important determinant of health outcomes generally, with public health relevance, particularly for HIV and TB services in areas of high prevalence. The main aim of universal health coverage is to make healthcare accessible without barriers based on affordability, availability or acceptability of services. Various factors have been shown to hinder or enable patient utilization of healthcare services, such as organization of services, costs of transport to and from clinics, time loss at clinics receiving care, staff attitudes, waiting times and cleanliness of facilities. Objectives This study aimed to determine and quantify factors associated with healthcare utilization in patients utilizing HIV care (including those not yet initiated on antiretroviral treatment (ART) - pre-ART) or TB treatments in a rural sub-district of Hlabisa in KwaZulu-Natal and to understand healthcare providers’ perspectives regarding patient care and provision of quality care. The study used data from patient exit interviews, and additionally findings from interviews with healthcare providers in the local HIV treatment and care programme, structured around the responses from the patient-exit interviews. The study had three specific objectives: 1) to establish and quantify factors associated with healthcare utilization, with utilization decomposed to availability, affordability and acceptability of healthcare services, for patients in HIV or TB treatment and care; 2) to quantify ability-to-pay for healthcare and identify associated factors for patients in pre-ART care, or on ART or TB treatment; 3) to understand the healthcare providers’ perspectives regarding patient care and provision of quality HIV care. Methods In 2009 patient-exit interviews were conducted in six primary healthcare (phc) clinics in rural South Africa with 300 patients receiving ART and 300 patients receiving TB treatment; patients were randomly selected using a two-stage cluster random sampling approach with primary sampling units (phc) selected with probability-proportional-to-size. In 2010 an additional 200 HIV-infected patients in pre-ART care from the same clinics were interviewed. Patient-exit interviews were conducted in a private room outside the facility and all data were analysed using STATA 11. In 2012, a qualitative study was carried out with healthcare providers in eight (of 17) randomly selected phc clinics; 25 ART healthcare providers were engaged in discussion structured around patient-exit interviews feedback to assess possible challenges/facilitators ART healthcare providers face when providing care. Discussions took place in the consultation rooms when no clinical sessions were ongoing and these were recorded and transcribed; and data were managed using Nvivo 10. Thematic content analysis was conducted using both inductive and deductive approaches and clinic or healthcare provider identifiers were removed and replaced with pseudonyms. Summary statistics describe patient characteristics by patient group and key availability, acceptability and affordability factors associated with utilization of healthcare services; separate univariate and multivariable regression models were run to assess associations between patient characteristics and these key availability, acceptability and affordability factors. Patient socio-demographic characteristics (sex, age, education, employment and marital status) were controlled for and adjusted for clustering at facility-level. Factor analysis was performed to investigate underlying patient satisfaction factors. Results Socio-demographic characteristics of the patients More women than men were seen in the primary care clinic, especially among pre-ART patients (79%), followed by 62% HIV and 53% utilized TB care, with an age-sex profile comparable to previous studies in the area. Pre-ART patients were significantly younger than ART and TB patients, with a median age of 32 years for pre-ART patients, 39 years for ART patients and 37 years for TB patients. Unemployment at household level was high, up to 86% of ART patients’ head of households were unemployed and only 9% of TB patients were employed.MT201

Determinants of condom use among young adults aged 15-24 years in the Africa Centre Demographic Surveillance Area in Kwazulu Natal, South Africa, 2005

Abstract Objectives This study investigates the patterns and levels of condom use; the determinants of condom use and of consistency of use among young adults aged 15-24 years in the Africa Centre Demographic Surveillance Area (ACDSA) in 2005. Methodology Secondary data analysis of data from three sources of surveys conducted in ACDSA in 2005 was done. A sample of 4 157 respondents was analyzed. Univariate and multivariate analysis was employed to compare determinants of condom use and of consistency of use. Results Condom use with the most recent partner in the last year was (51.7%). The main determinants of condom use were partner age difference, residence of partner and assets. Having an older partner than a same age partner was associated with less likely to use condoms (AOR=0.71 p=0.03 females, AOR=0.51 p=0.01 males). Those who were not residing with their partners were more likely to use condoms than those residing with their partners (AOR=1.62 p=0.01 females, AOR=1.61 p=0.03 males). Having more than seven assets was associated with increased chances of using condoms than those with less than seven assets (AOR=1.51 p<0.01 females, AOR=1.67 p<0.01 males). The key determinants of consistent condom use were: age, sex and type of relationship. Females were less likely to use condoms consistently (AOR=0.63 p=0.02) and growing older was associated with lower consistent condom use (AOR=0.88 p<0.01 females, AOR=0.90 p<0.01 males). Being in a marital/cohabiting relationship was associated with lower consistent condom use (AOR=0.68 p<0.01 both sexes and AOR=0.64 p=0.01 males) than those in non-marital/non-cohabiting relationship. v Conclusion Condom use differs between sexes and decreases with age probably because condoms are a male determined method, high contraception use, poor negotiation skills for condom use, need for children and formation of more stable relationships. A better socio-economic status increases condom use. Consistent condom use is lower in marital relationships and when the partner is older. This could be because of gender power inequalities in sexual relationships

Managing ancillary care in resource-constrained settings: Dilemmas faced by frontline HIV prevention researchers in a rural area in South Africa.

BACKGROUND: We describe the findings from a research ethics case study, linked with a team evaluating a package of intervention services to prevent HIV infection in adolescent girls and young women (AGYW) living in a rural and poor setting of KwaZulu-Natal, South Africa. METHODS: We conducted qualitative interviews (n=77) with members of the linked research team evaluating the intervention programme, programme implementing staff, AGYW enrolled in the intervention programme, caregivers, ethics committee members, Public Engagement officers, community advisory board members and community stakeholders. Data were analysed iteratively using thematic framework analysis. Themes were determined by the study aims combined with an inductive development of codes emerging from the data. RESULTS: The findings show that the burden of providing ancillary care fell primarily on the shoulders of frontline researchers and programme staff. Dilemmas around responding to gender-based violence illustrated the limits of 'referral to services' as a solution for meeting ancillary care obligations in contexts with barriers to basic health and social services. CONCLUSION: Our findings show important gaps in meeting ancillary care needs. Participants' needs required social and economic support which frontline researchers and implementing partners were not able to meet, causing moral distress

The Changing Landscape of Diverse HIV Treatment and Prevention Interventions: Experiences and Perceptions of Adolescents and Young Adults in Rural KwaZulu-Natal, South Africa.

In sub-Saharan Africa, adolescents and young adults aged 15-24 years constitute 36% of an estimated 1. 3 million new HIV infections. Complex biological, social, behavioral and structural factors, as well as cultural norms contribute to whether and how young people perceive, are aware of and experience diverse HIV interventions. This qualitative study explored experiences and perceptions of intervention types among adolescents and young adults, and how different interventions could hinder or facilitate HIV treatment and prevention for adolescents and young adults in rural KwaZulu-Natal, South Africa. Data were collected as part of a DREAMS impact evaluation at the Africa Health Research Institute, KwaZulu-Natal between May 2017-January 2018. We used a combination of rapid community mapping and participant observation in four communities, 58 individual interviews, and 10 group discussions with 61 participants, conducted with both adolescent girls and young women and adolescent boys and young men. Thematic analysis focused on the changing HIV prevention landscape as experienced by adolescents and young adults. Participants reported a mix of new and old biomedical, behavioral, traditional, and locally-developed HIV prevention approaches. The appeal of the newer approaches depended on the extent to which they resonated with existing traditional and longstanding HIV prevention methods and the extent to which they engaged with adolescents and young adults' sexual experiences and with the social and structural factors including gender-related issues. These data demonstrate that in this context, newer methods and approaches can and should synergise with existing methods and beliefs. The HIV prevention landscape is evolving rapidly. Good community links and engagement offer an alternative support structure that could embrace both locally-developed approaches and traditional practices This structure could potentially support feasibility and acceptability of new and old HIV prevention approaches, without creating an impression that new approaches always need to replace the old

The effect of eligibility for antiretroviral therapy on body mass index and blood pressure in KwaZulu-Natal, South Africa

We use a regression discontinuity design to estimate the causal effect of antiretroviral therapy (ART) eligibility according to national treatment guidelines of South Africa on two risk factors for cardiovascular disease, body mass index (BMI) and blood pressure. We combine survey data collected in 2010 in KwaZulu-Natal, South Africa, with clinical data on ART. We find that early ART eligibility significantly reduces systolic and diastolic blood pressure. We do not find any significant effects on BMI. The effect on blood pressure can be detected up to three years after becoming eligible for ART

Directed and target focused multi-sectoral adolescent HIV prevention: Insights from implementation of the 'DREAMS Partnership' in rural South Africa.

INTRODUCTION: The "DREAMS Partnership" promotes a multi-sectoral approach to reduce adolescent girls and young women's (AGYW) vulnerability to HIV in sub-Saharan Africa. Despite widespread calls to combine structural, behavioural and biomedical HIV prevention interventions, this has not been delivered at scale. In this commentary, we reflect on the two-year rollout of DREAMS in a high HIV incidence, rural and poor community in northern KwaZulu-Natal, South Africa to critically appraise the capacity for a centrally co-ordinated and AGYW-focused approach to combination HIV prevention to support sustainable development for adolescents. DISCUSSION: DREAMS employed a directed target-focused approach in which local implementing partners were resourced to deliver defined packages to AGYW in selected geographical areas over two years. We argue that this approach, with high-level oversight by government and funders, enabled the rapid roll-out of ambitious multi-sectoral HIV prevention for AGYW. It was most successful at delivering multiple interventions for AGYW when it built on existing infrastructure and competencies, and/or allocated resources to address existing youth development concerns of the community. The approach would have been strengthened if it had included a mechanism to solicit and then respond to the concerns of young women, for example gender-related norms and how young women experience their sexuality, and if this listening was supported by versatility to adapt to the social context. In a context of high HIV vulnerability across all adolescents and youth, an over-emphasis on targeting specific groups, whether geographically or by risk profile, may have hampered acceptability and reach of the intervention. Absence of meaningful engagement of AGYW in the development, delivery and leadership of the intervention was a lost opportunity to achieve sustainable development goals among young people and shift gender-norms. CONCLUSIONS: Centrally directed and target-focused scale-up of defined packages of HIV prevention across sectors was largely successful in reaching AGYW in this rural South African setting rapidly. However, to achieve sustainable and successful long-term youth development and transformation of gender-norms there is a need for greater adaptability, economic empowerment and meaningful engagement of AGYW in the development and delivery of interventions. Achieving this will require sustained commitment from government and funders

Young people's experiences of sexual and reproductive health interventions in rural KwaZulu-Natal, South Africa.

Despite efforts to address HIV-infection, adolescents and young peoples' (AYP) engagement in interventions remains suboptimal. Guided by a risk protection framework we describe factors that support positive and negative experiences of HIV and SRH interventions among AYP in rural KwaZulu-Natal, South Africa, using data from: community mapping; repeat semi-structured individual interviews (n= 58 in 2017, n=50 in 2018, n=37 in 2019-2020); and group discussions (n=13). AYP who had appropriate and accurate HIV-and SRH-related information were reported to use health care services. Responsive health care workers, good family and peer relationships were seen to be protective through building close connections and improving self-efficacy to access care. In contrast to cross-generational relationships with men, alcohol and drug use and early pregnancy were seen to put AYP at risk. Policies and interventions are needed that promote stable and supportive relationships with caregivers and peers, positive social norms and non-judgemental behaviour within clinical services

"They have this not care - don't care attitude:" A Mixed Methods Study Evaluating Community Readiness for Oral PrEP in Adolescent Girls and Young Women in a Rural Area of South Africa.

INTRODUCTION: Adolescent girls and young women (AGYW) remain disproportionately affected by HIV. In a rural area of South Africa with an annual incidence (2011-2015) of 5 and 7% per annum for 15-19 and 20-24-year olds respectively, oral pre-exposure prophylaxis (PrEP) could provide AGYW with a form of HIV prevention they can more easily control. Using quantitative and qualitative methods, we describe findings from a study conducted in 2017 that assessed knowledge of and attitudes toward PrEP to better understand community readiness for an AGYW PrEP rollout. METHODS: We used descriptive analysis of a quantitative demographic survey (n = 8,414 ages 15-86) to identify population awareness and early PrEP adopters. We also conducted semi-structured, in-depth interviews with a purposive sample of 52 potential PrEP gatekeepers (health care workers, community leaders) to assess their potential influence in an AGYW PrEP rollout and describe the current sexual health landscape. Interviews were recorded, transcribed, and iteratively coded to identify major themes. RESULTS: PrEP knowledge in the general population, measured through a demographic survey, was low (n = 125/8,414, 1.49% had heard of the drug). Medicalized delivery pathways created hostility to AGYW PrEP use. Key informants had higher levels of knowledge about PrEP and saw it as a needed intervention. Community norms around adolescent sexuality, which painted sexually active youth as irresponsible and disengaged from their own health, made many ambivalent towards a PrEP rollout to AGYW. Health care workers discussed ways to shame AGYW if they tried to access PrEP as they feared the drug would encourage promiscuity and "risky" behaviour. Others interviewed opposed provision on the basis of health care equity and feared PrEP would divert both drug and human resources from treatment programs. CONCLUSIONS: The health system in this poor, high-HIV incidence area had multiple barriers to a PrEP rollout to AGYW. Norms around adolescent sexuality and gatekeeper concerns that PrEP could divert health resources from treatment to prevention could create barriers to PrEP roll-out in this setting. Alternate modes of delivery, particularly those which are youth-led and demedicalize PrEP, must be explored

Impact of DREAMS interventions on experiences of violence among adolescent girls and young women: Findings from population-based cohort studies in Kenya and South Africa

DREAMS aims to reduce HIV incidence among adolescent girls and young women (AGYW) by tackling drivers of HIV risk including gender-based violence. We evaluate the impact of DREAMS on recent experiences of violence perpetuated by men against AGYW. AGYW cohorts were randomly selected from demographic platforms in South Africa (rural KwaZulu-Natal) and Kenya (Nairobi informal settlements and rural Gem sub-county). AGYW aged 13-22 years were enrolled in 2017 (Nairobi, KwaZulu-Natal) or 2018 (Gem), with annual follow-up to 2019. We described proportions of AGYW who self-reported experiences of violence perpetrated by males in the 12 months preceding the interview, overall and by form (physical, sexual, emotional). We investigated associations with DREAMS (invitation to participate during 2017-2018) through multivariable propensity score-adjusted logistic regression and estimated the causal effect of DREAMS on experiences of violence, under counter-factual scenarios in which all versus no AGYW were DREAMS beneficiaries. Among 852, 1018 and 1712 AGYW followed-up in 2019 in Nairobi, Gem and KZN, respectively, proportions reporting any violence in 2019 were higher in Nairobi (29%) than Gem (18%) and KwaZulu-Natal (19%). By sub-type, emotional and physical violence were more frequently reported than sexual violence. We found no evidence of an impact attributable to DREAMS on overall levels of violence, in any setting. Nor was there evidence of impact on sub-types of violence, with one exception: an increase in physical violence in Nairobi if all, versus no, AGYW were DREAMS beneficiaries (16% vs 11%; +5% difference [95% CI: +0.2%, +10.0%]). Experiences of gender-based violence were common among AGYW, especially in urban settings, and DREAMS had no measurable impact on reducing violence within three years of implementation. Violence prevention programming that reaches more men and the broader community, sustained for longer periods, may yield greater gains in violence reduction than AGYW-focused programming. Additionally, more investment in implementation research is needed to bridge trial-based study findings from efficacy to population-level effectiveness