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Rebecca Hodes, Lucie Cluver, Mildred Thabeng, Elona Toska, Beth Vale and the Mzantsi Wakho Team

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Rebecca Hodes, Lucie Cluver, Mildred Thabeng, Elona Toska, Beth Vale and the Mzantsi Wakho Team ART adherence and sexual and reproductive health uptake among HIV+ teens in the Eastern Cape province of South Africa Rebecca Hodes, Lucie Cluver, Mildred Thabeng, Elona Toska, Beth Vale and the Mzantsi Wakho Team 18 July 2014 THE EASTERN CAPE • Previous apartheid bantustans • Provincial HIV prevalence 11.6% • HIV prevalence among children 2 – 14 is 1.3% and youth 15 – 24 is 6.2% (HSRC 2014) // 2 NEXT WHAT DID WE WANT TO KNOW? 1. How do teens practice ART-adherence? When, where, how and why do they take their pills? 2. Why do they default on ART? 3. What do teens believe about sexual and reproductive health? How do they integrate SRH with ART? 4. How are healthcare workers integrating SRH and HIV treatment for teens? 5. What can future policy and programming learn from this? // 2 NEXT WHAT HAVE WE DONE SO FAR? Quantitative arm Consulted with experts, health officials and teenagers. Planned and launched linked 3-year quantitative study of HIV- positive adolescents (n=600) assessing risk and resilience- promoting factors for ART adherence and SRH utilization. Built an interactive model of multiple interlinking influences on adolescent adherence. Constructed, translated and piloted the survey in collaboration with HIV+ teens, research assistants and qualitative researchers. // 4 NEXT // 5 NEXT QUANTITATIVE MEASURES AND CONSTRUCTS Where possible, measurements validated in SA e.g. Berger HIV stigma scale. Five groups: (1) outcome measures; (2) complex multi-level factors; (3) individual level factors; (4) family and community level factors and (5) societal and structural factors. Adherence measured by triangulating three methods: (1) self-reports of various time scales; (2) clinical outcomes (viral loads and CD4 counts) and (3) pill counts, when available. Access to SRH services measured through past and current use of contraception, high-risk and protective behaviours (e.g. multiple partners, transactional sex, and delayed sexual debut), experiences of accessing SRH services, and participants’ recommendations on how to improve SRH services. // 6 NEXT SAMPLING AND RECRUITMENT • Initial mapping of 80 facilities in the study area. • Sample of 32 facilities identified (each providing care to at least 5 adolescents on ART) • Recruitment of participants ongoing in nearly 20 facilities, with 300 participants as of July 2014. Female Male Total Characteristics Sub-group N (%) N (%) N (%) Early adolescence (10-14) 90 (50) 89 (50) 179 (62) Age Later Adolescence (15-19) 65 (58) 47 (42) 112 (38) Disclosure Knows Own Status 113 (54) 98 (46) 211 (73) Subtotals 155 (53) 136 (47) 291 (100) // 7 NEXT WHAT HAVE WE DONE SO FAR? Qualitative arm • Participants: recruited from sites providing health and social support services for HIV+ teens. Participants include teens, friends, nurses, counsellors, clinic receptionists, data capturers and social workers, pharmacists, community healthworkers, teachers, grandparents, mothers, fathers, siblings and more… • Research activities with teens: visits to social services (SASSA), farming, laundry, cooking, sharing a meal, walks, drawing, attending doctor’s appointments (viral load, HIV or CD4 test), dancing and playing games) …. • Research activities with healthcare workers: work shadowing, interviews, debriefing, help facilitating support groups. // 8 NEXT WHAT HAVE WE DONE SO FAR? Triangulated qualitative research with teens, caregivers and healthcare workers recruitment through clinics, hospitals and support groups 1. In-depth, semi-structured interviews, home-visits and clinic observations (n=50 teens; n=70 healthcare workers) 2. Focus groups and workshops 3. Body-mapping, play therapy and innovative techniques for exploring teens’ ART and SRH practices. // 9 NEXT WORKSHOPS: BODYMAPPING AND DREAM CONSULTATIONS // 10 NEXT THE DREAM CLINIC // 11 NEXT THE DREAM CLINIC // 12 NEXT CONSULTATION AND DISSEMINATION King Williams Town Children and Youth Care • Hospitals and clinics Centre • Academic audiences Kheth’impilo in Amathole • Provincial-level government, NGOs and development workers district • National and international-level government and NGOs ICAP study co-ordinators at Frere Hospital HIV Pediatric Technical Eastern Cape Department of Cecilia Makiwane Hospital Minister and Director Complex Working Group, South General of Health, South Health, Section 27, Raphael African National Centre, Institute for Youth Dimbaza Community Africa Healthcare Centre Department of Health World Development South Africa, UNICEF South Africa and Keiskamma Trust, Tutu East London Children and Bank/UNAIDS/UNICEF Youth Care Centre New York launch of joint Network Foundation, Pediatric AIDS UNAIDS Planning Treatment for Africa (PATA) Bhisho Hospital on Evidence for Social Empulweni Gompo Clinic Coordination Board and Structural Drivers Universities of Cape Town, Oxford and Witswatersrand // 13 NEXT Universities of Cape Town, Oxford and Witwatersrand HOW DO YOUNG PEOPLE AND THEIR FAMILIES ENGAGE WITH HEALTH SERVICES? • Health system distant literally and practically. Teens generally not health citizens. • Eclectic healing strategies (traditional and scientific meds combined). • HIV facilitating access to resources (NGOs, mobility, skills and personal development) • High levels of family morbidity. • Caregiver as medium and moderator between healthcare workers and teens. // 14 NEXT WHAT FACILITATES GOOD ART ADHERENCE? • Routines domestic life and leisure hours spent at home • Obedience to adult authority • Incentives and punishments • Narratives of grief and death • Understanding of ART as preserving life and promoting sexual desirability • A friend or relative on chronic medicines • Most adherent respondents were shy, fearful, obedient, home-bodies // 15 NEXT WHAT ARE THE BARRIERS TO ART ADHERENCE? • Mobility. Being on the move and away from home • Difficult relationship with adult caregivers • Resistance to adult authority • Food insecurity • Pill burden • Not having a cell-phone • Wanting to hide HIV-status from peers or sexual partners • ART defaulting often ‘circumstantial’, resulting from clinic stockouts, difficulties with transport and food insecurity (together with the belief that taking ART on an empty stomach was dangerous), rather than the result of deliberate non- compliance. // 16 NEXT WHAT DO TEENS UNDERSTAND ABOUT SRH? • Lack of education about reproductive cycle and sexual health. • Myths about contraception abound. • Majority of teenage girls use Depo or Nuristerate - high levels of dissatisfaction. • Implanon increasingly popular - pros and cons • Pregnancy is a greater fear than HIV infection/re-infection. • High demand for contraception and accurate info about SRH at schools. • Adherence to contraceptive pills is patchy (related to ART adherence?) Methods for support and promotion from healthcare workers very similar. Space for innovation. • Condoms – worms and wrappers. • Fertility desires paramount. // 17 NEXT TEENS AND TERMINATION OF PREGNANCY • Unwanted pregnancies common and highly stigmatised. • Resistance to HIV testing among TOP clients. • Pervasive abortion stigma. • High rates of illegal abortion (lamp-post providers) • Necessity of youth-friendly clinic hours – after 14:00. • ‘Responsibility’ and blame. // 18 NEXT WHAT DO HEALTHCARE WORKERS UNDERSTAND ABOUT ART AND SRH? • Nurses as moral authorities and gatekeepers. ART? TOP? – Contraception! • Patient suspicions towards HIV and pregnancy diagnoses. • Misinformation about the biomechanics of contraception (perhaps purposeful). • Little regard for fertility intentions: focus on induced sterility (SA’s pronatalism?) • Focus on ART roll-out. What about SRH? // 19 NEXT SUPPORT TOOLS Need to be: • Portable, discrete, accessorisable, user-friendly, cool. • Cellphones and television = key technologies. • School =primary site of HIV information. • Future steps… // 20 NEXT SO WHAT DO YOU THINK? [email protected] // 21 NEXT THANK YOU RESEARCH PARTNERS AND ADVISORS, TEENS, HEALTHCARE WORKERS, FUNDERS // 22 NEXT South African National Department of Health Eastern Cape Provincial Department of Health THANK YOU Department of Social Development Department of Basic Education UNICEF Keiskamma Trust Raphael Centre Small Projects Foundation Cecilia Makiwane Hospital Justus Hofmeyer, Sibongile Mandondo, Nicoli Nattrass and Francois Venter. Marissa Vicari and the International AIDS Society CIPHER mentors and advisors Linda-Gail Bekker, Annette Sohn and others Teen participants and Mzantsi Wakho team .
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