Rebecca Hodes with Lucie Cluver & the Mzantsi Wakho team International Workshop on HIV Adolescence, Johannesburg, 5 October 2017

Transcription

1 ADOLESCENTS, RELATIONSHIPS AND INTERACTIONS Mzantsi Wakho focus group with adolescent girls, Mdantsane (Eastern Cape), 26 August 2014 Rebecca Hodes with Lucie Cluver & the Mzantsi Wakho team International Workshop on HIV Adolescence, Johannesburg, 5 October

2 ANCIENT WISDOM Our earth is degenerate in these later days; there are signs that the world is speedily coming to an end; bribery and corruption are common; children no longer obey their parents; every man wants to write a book and the end of the world is evidently approaching. Assyroid King, c BCE 2

3 BUT HIV is also a novel challenge The public ART roll-out is unique The evidence base is vast and shifting: from access to adherence Focus on emerging issues from the Mzantsi Wakho research study: 1. Proxy patients 2. Comply or die : the compliance ultimatum 3. Positive gender dynamics: can we surf the wave? 3

4 MZANTSI WAKHO: WHAT DID WE WANT TO KNOW? 1. What are the risk and protective factors for ART adherence and access to sexual and reproductive health services? 2. What are the lived experiences of HIV+ teens? 3. What can policy and programming learn from this? 4

5 RESEARCH DESIGN Interviewed 90% Qualitative research - N=100 youth, 30 healthcare providers, 30 caregivers - 42 months of community observations - Over 1000 hours of clinic observations (ART, family planning, trauma) - Participatory research Quantitative longitudinal panel study - Every adolescent ever initiated ART in a health district: 53 health facilities (grown to 108 by Sept 2017) - N=1,526 adolescents, 1060 HIV+, 467 HIV- - Community-tracing, 3-year longitudinal tracking Policy influence - Teen-led - SA s Adolescent and Health Health Policy maternal orphan knows HIVstatus HIV- HIV+ paternal orphan double orphan refused 4% excluded 1% severe cognitive delay 1% unable to trace 4% lacks basic necessities Quantitative sample (Cluver et al. 2016) 5

6 STUDY SETTING: EASTERN CAPE Community-based Urban, peri-urban, rural settlements Transition from bantustan care to healthcare for all Provincial HIV prevalence 11.6% (HSRC, 2014 at baseline) ART: Primarily nurse-managed 6

7 DATA DIVERSITY 7

8 MAPPING HEALTH SERVICES: DIFFERENT IMPRINTS Vale, Hodes, Cluver and Thabeng, Bureaucracies of blood and belonging: documents, HIV+ youth and the state in South Africa, Development and Change (2017) Department of Health, South Africa s National Adolescent and Youth Health Policy (2017) Journal of the International AIDS Society, dedicated issue on youth and the SDGs, (forthcoming 2018) 8

9 GOOD ADHERENCE A lattice of care: Clinical and sociostructural facets Relational dynamics Hyothesised as atriumvirate: Teens Caregivers Healthcare workers 9

10 PROXY PATIENTS From a family album: 14 year-old and great aunty (Photo: Mdantsane, 24 November 2014) *with apologies to Lucie Cluver, Elona Toska and the quants team 10

11 COMPLY OR DIE THE ADHERENCE ULTIMATUM From caregivers Akuhle* [14 years old] was having this feedback from her grandmother, about her mother being sick, and if she does not take her treatment on time she is going to be like her mother and get skinny and die. (Interview with adolescent, Dimbaza, 26 June 2014) So now what we do is tell these kids of ours that if they don take their pills they will die (Focus group with caregivers, Mdantsane, 8 October 2014) From healthcare workers Truncated treatment literacy Deception can backfire c.f. Toska et al, Sex and secrecy: How HIV-status disclosure affects sex sex among HIV+ adolescents, AIDS Care 2015; Cluver et al. HIV is like a tsotsi, AIDS

12 POSITIVE SEXUAL NORMS Facilitator s question: [How would you get a woman to have sex with you?] Respondent 1: if the girl doesn t want to, I would watch porn with her. Facilitator: so is that the only way you can do it? Respondent 1: I can also touch her all over her body. Facilitator: and you [ ]? Respondent 2: I can drug her because I don t have other way. Focus group with adolescent males, East London, 29 November 2014 Respondent 3: That s rape dude. 12

13 SO WHAT DO YOU THINK? 13

14 THANK YOU: MZANTSI WAKHO FUNDERS AND PARTNERS Research team: W Booi, N Bungane, L Button, KE Chademana, L Cluver, N Galela, L Gittings, N Gwebecimele, E He, A Heusel, S Hoeska, R Hodes M Isaacsohn, Z Jantjies, R Jopling, C Kama, B Kamile, B Kinana, V Luke, B Madondo, K Makabane, B Makwenkwe, T Mampangashe, Z Marikeni, D Mark, A Mayekiso, A Mbiko, A Mboyiya, D Mhlauli, S Medley, P Mngese, S Mngese, P Mjo, S Mona, T Moyikwa, S Mpimpilashe, M Mpumlwana, S Mqalo, S Mwellie, P Myoyo, M Neel, U Ngesi, S Ngozi, P Nobatye, N Nurova, M Pantelic, T Ramncwana, J Rosenfeld, B Saliwe, J Sandelson, L Sidloyi, I Skracic, R Smith, N Sontsonga, J Steinert, B Taleni, M Thabeng, E Toska, S Tshaka and T Tsiba. 14