An A-Z of research disasters Lucie Cluver

1. Puff adders, taxi lords and budgets from hell. An A-Z of research disasters Lucie Cluver

2. Collaborative research: science to assist policy

3. Longitudinal panel survey of AIDS-orphanhood: 1025 children, 2005-2009 4-year longitudinal survey • 2005: N=1021 (aged 10-18) • 2009: 71.5% follow-up • 3 provinces South Africa • Comparing AIDS-orphaned/other-orphaned/non-orphaned children Measures and analysis: • Standardised scales, national surveys (census, DHS etc.) • Verbal autopsy method (sensitivity 83%, specificity 75%) • multivariate logistic, log-linear and mediation modelling • All controlling for socio-demographics Qualitative link studies • Pilot and follow-up: n=290 children

4. National longitudinal study: 6850 children, 2500 adult caregivers, 2008-2012 Longitudinal national survey • Main study: N=6000 (age: 10-18) • 3 provinces South Africa; 6 sites >30% prevalence • Stratified random sampling of census EAs • Every household with a child aged 10-17 • Urban/rural, 1 year follow-up in 2 provinces (n=3401, 97% follow-up) • Measures • Standardised scales, national surveys • Transactional sex, age-disparate sex, sex using • substances, unprotected sex, multiple partners • Ethics • Approved by University of Cape Town, Oxford, • KwaZulu-Natal, Province Health & Education Depts • Social & health service referrals • Controlling for prior HIV risk

5. Sinovuyo Teen – Parenting for Lifelong Health Recruitment Baseline data collection • Adapt the best evidence-based programs for child abuse prevention to sub-Saharan Africa • Work collaboratively with government, UNICEF, WHO, NGOs and communities • To pre-test, improve, pre-test, improve and test in RCTs • If they work, to provide freely within the developing world Random allocation Intervention group Control wait-list Group intervention, ongoing peer support Treatment as usual Immediate post-test data collection 1-year follow-up data collection Control group: group intervention, ongoing peer support

6. Timetables go to hell Can be almost any cause: • Riots, strikes, floods • Under-estimating how long things take • Staff crises/exhaustion • Contracts/funding/running out of cash • Some helpful responses: • Accept that it will never be perfect • Always make Plan B (and have a secret Plan C) • Try to have some back-up cash (I need to follow own advice here) • Encourage/force team to tell you as soon as things start going wrong • Don’t blame them – problem-solve together • Apologise to them if you messed up.

7. Serious safety concerns Common causes: • Urban: political violence, violent crime • Rural: snakes, escaped animals • All: road accidents Things that might help: • Safety protocols: plan with team • Community and community leader liaison • Community crime leader liaison • Travelling in pairs • Staff safety has to be the priority in all decisions • Insurance and car licenses. Training for all drivers. • This is a complete nightmare and never gets better.

8. Can’t cope with what we are seeing (for staff and you) Common causes: • Over-exposure to child abuse • Working too hard – exhaustion • Child disclosure of really horrific abuse • Inability to help sufficiently • Often leads to staff arguments and tension Some ways of approaching this • Regular supervision • Treats, Enforced holidays • Staff need to know you’ve got their back • Action – referrals and helping kids (also part of ethics)

9. Methodology goes haywire Common causes • Political interference • Local gatekeepers • Riots/floods/fires/war etc. Some things that help • Make staff safety the priority, • Be realistic. • Not everything has to go into the publication… • Do the best you can in each circumstance • Call/write and ask for advice • Tell your funders (if there’s a good reason)

10. Ethics get really tricky • Some key issues • Kids completely uninterested in detailed IRB consent forms, verbal description crucial • Field staff – perverse incentives against informed consent • No guardian/abusive guardian • When you have to break confidentiality • Some responses: • Engage with ethics committees • Have a social worker/psychologist to supervise field staff • Don’t make payment/success dependent just on recruitment numbers • Can get alternative consent • Be strong for your team.

11. A: when existing systems can’t help with severe child Abuse cases Common causes • Overburdened health/social services • Staff burnout • Remote, rural areas far from services Some things that help • Mapping services before you start • Find good professionals • Have a social worker to supervise staff • Emergency protocols i.e. rape cases • Just do stuff if it’s needed – sort out the details later • Providing disclosure-handling skills to field staff

12. Longitudinal follow-up Can be really tricky • Children move homes • Areas get destroyed • Cellphones die • No administrative data Some things that help • Get three names addresses and cell numbers of people who would be able to find them • Send back the same interviewers • Certificates help people remember and find kids again • This is like detective work – set money aside, and be tenacious!

13. W: Getting the findings to the World Nobody will know your findings if: • You don’t actively disseminate • You don’t market findings at the right level • People/organisations feel they are being attacked Some helpful ideas: • Make a list of ‘who needs to know this’ at community, provincial, national, international level • Engage with them early, ideally in planning stages of the research – make them involved and make your research more useful • Ask how they would like results: presentations/policy briefs/video • Use the media: local radio, newspapers, your org’s press office

14. Z having that Zing impact Get your research out there: • Have a very simple, clear message (in 1 sentence!) • Simplify results, don’t try to look clever • Use graphs/pictures not words • Publishing in peer-reviewed journals can really help. Worth the hassle (eventually). • Give credit to the NGOs/governments involved.

16. Parental AIDS predicts child abuse (OR1.8 CI 1.6-2.0) Cluver, L (2011). Nature, 474 27-29.

17. Compound effects of abuse & parental AIDS on child risk of transactional sexual exploitation Cluver, L, Orkin, M, Boyes et al, (2011). JAIDS

18. Mechanism 4: Care and support reduces HIV-risk behavior through abuse Economic support Care & support p<.047 B.151 p<.001 B-.11 Severe poverty p<.001 B-.82 HIV-risk behavior incidence Physical/emotional abuse p<.001 B.15 Moderated mediation model 59: (Hayes 2012), controlling for age, baseline HIV risk behavior

19. Funders: thank you. www.youngcarers.org.za Regional Interagency Task Team for Children Affected by AIDS – Eastern & Southern Africa The Economic & Social Research Council National Department of Social Development HEARD, University of KwaZulu-Natal The Nuffield Foundation The Claude Leon Foundation The John Fell Fund The National Research Foundation

20. I’m not the only one going through this. There are many other kids in the same situation. I would like to say to them that they mustn’t give up. They must just accept it and at the end of the day believe that they will succeed at something. They mustn’t give up. TAG team member, 14 yrs. www.youngcarers.org.za