1.
Including AIDS-affected young people in OVC research: Challenges and opportunitiesChild Status Network, November 2012The TAG team, Dr. Lucie Cluver,Oxford University & University ofCape Town, and the Young Carers Team

2.
Why include children in OVC research?Ethical reasonsCRC: Children’s views must be considered andtaken into account in all matters that affect them(UNICEF technical note 2002).Linking to our programming approachesCommunity collaboration, partnership, power-sharing, reducing social inequalities, long-termplanning and commitment (Israel, 1992, Friere,1970, Jones, 2007)Scientific reasonsMight help us make less mistakes!

3.
What is the real picture?Child participation very rarely done in research• Most with qualitative research (Becker, 2004; Checkoway,2003; Maglajlic, 2006; Nygreen, 2006)• Some i.e. UK National Health Service Young Persons Advisory Groups, University of Texas YAG• Youth-led: identifying topic, designing research, data collection, analysis and dissemination.• How does this model fit quantitative research and M&E?Can we learn from child advisory groups for non-research?• REPSSI doing work on this

4.
Our mistakes and the TAG team’s successes

5.
Collaborative research: Science to inform Policy Collaborative research programme National Action Committee (NACCA) SA Universities: Oxford, UCT, UKZN, Wits

6.
Linked longitudinal studies, 2005-2012: n=8000 childrenOrphan resilience study (2005-2009)• 2005: N=1021 (aged 10-18)• 2009: 71.5% follow-up• 3 provinces South AfricaNational Young Carers study (2009-2012)• Main study: N=6002 (age: 10-17)• pilot: 850 children,• 6 randomly-selected sites >30% prevalence, 3 provinces• Urban/rural, 1 year follow-up• Stratified random sampling of census enumeration or tribal areas• 2500 matched child-caregiver pairsMeasures and analysis• Standardised scales• Multivariate logistic regression, log-linear models, structural equation models, all controlling for socio-demographics

7.
Lessons learned (the hard way)Weekends not meetings• Transport for kids from distant areas• Time to relax and build trust (and drop the ‘cool’)• Time away from stressful home environments• Safety concernsLOTS of organisation needed• Work on ratio of 10-1 hours• Need a team of people• Prep work with the kids –contacting, consent etc.

8.
Being serious about fun• Alternate serious with fun activities• and make the serious ones active and interesting• Kids have say in what goes into next year’s camp (and in having next years camp)• Getting the food right!

9.
Safety and ethics• Teenagers and sexual safety• Kids on ART• Getting consent… and again…. and again….• Confidentiality beyond the weekend – trusting teens

10.
Child input into research• Working on their level• Informing research• Designing study tools• Pilot-testing instruments• Planning new studies• Post-research programming (REPSSI)• Dissemination…. Thinking about how?Plus…• Soccer, walks in the mountains, talent shows, marshmallows…

11.
Questions we still can’t answerTrauma• Disclosure• Protecting kids• Upset and sadness• Are we getting the same things out of this?

12.
Questions we still can’t answerRelationships and responsibilities• What is your responsibility when things go wrong for your advisory group?• Building personal relationships• What do we do when the ‘kids’ grow up?• Building into long-term funding• Real empowerment, real dissemination‘I have like because it nice, this research, to us mean a lot. It canbe positive to help us with our problems at home…’ Michael, 16.

13.
Compound effects of abuse & parental AIDS on child risk oftransactional sexual exploitation 57%Cluver, L, Orkin, M, Boyes et al, (2011). JAIDS 13% 7% 1% Healthy family AIDS-sick parent Abused & hungry AIDS-sick parent, abused, hungry

14.
Really useful texts and links:UNICEF Evaluation technical note ‘Children Participating in Research, M&E - Ethics & YourResponsibilities as a Manager. http://www.unicef.org/evaluation/files/TechNote1_Ethics.pdfHart, Roger. 1992. Children’s Participation: from Tokenism to Citizenship. Innocenti Essays. No. 4. NewYork: UNICEF. http://www.unicef-irc.org/publications/pdf/childrens_participation.pdfBoyden, Jo and Judith Ennew (Eds.). 1997. Children in Focus: A Manual for Participatory Research withChildren. http://www.gyerekesely.hu/childpoverty/docs/Children_in_focus_a_manual.pdfThe UK National Health Service Young Persons Advisory Grouphttp://www.mcrn.org.uk/children/design/ypag/96-national-young-persons-advisory-groupThe University of Texas Youth Advisory Group https://sph.uth.edu/tprc/youth-advisory-group/

15.
Thank you.The Economic & HEARD, University National DepartmentSocial Research of KwaZulu-Natal of Social DevelopmentCouncil The National Research The Nuffield The Claude Leon The John Fell Foundation Foundation Foundation Fund

16.
‘We are honoured to have such a wonderful opportunity to be the TAG team members… the teaching you have taught us, the skills we havegained, the different experiences we have had, the encouragement, and just to be with you guys. Don’t give up on us.’TAG team message, 2011www.youngcarers.org.za