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Including AIDS-affected young people in OVC research: Challenges and opportunities

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Including AIDS-affected young people in OVC research: Challenges and opportunities

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A Child Status Network webinar discussing how to involve young people (especially HIV-positive young people) in research about orphans and other vulnerable children. Dr. Lucie Cluver from the Young Carers Project and Oxford University led the November 2012 webinar.

A Child Status Network webinar discussing how to involve young people (especially HIV-positive young people) in research about orphans and other vulnerable children. Dr. Lucie Cluver from the Young Carers Project and Oxford University led the November 2012 webinar.

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Including AIDS-affected young people in OVC research: Challenges and opportunities

  1. 1. Including AIDS-affected young people in OVC research: Challenges and opportunities Child Status Network, November 2012 The TAG team, Dr. Lucie Cluver, Oxford University & University of Cape Town, and the Young Carers Team
  2. 2. Why include children in OVC research? Ethical reasons CRC: Children’s views must be considered and taken into account in all matters that affect them (UNICEF technical note 2002). Linking to our programming approaches Community collaboration, partnership, power- sharing, reducing social inequalities, long-term planning and commitment (Israel, 1992, Friere, 1970, Jones, 2007) Scientific reasons Might help us make less mistakes!
  3. 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. 4. Our mistakes and the TAG team’s successes
  5. 5. Collaborative research: Science to inform Policy Collaborative research programme National Action Committee (NACCA) SA Universities: Oxford, UCT, UKZN, Wits
  6. 6. Linked longitudinal studies, 2005-2012: n=8000 children Orphan resilience study (2005-2009) • 2005: N=1021 (aged 10-18) • 2009: 71.5% follow-up • 3 provinces South Africa National 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 pairs Measures and analysis • Standardised scales • Multivariate logistic regression, log-linear models, structural equation models, all controlling for socio-demographics
  7. 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 concerns LOTS of organisation needed • Work on ratio of 10-1 hours • Need a team of people • Prep work with the kids – contacting, consent etc.
  8. 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. 9. Safety and ethics • Teenagers and sexual safety • Kids on ART • Getting consent… and again…. and again…. • Confidentiality beyond the weekend – trusting teens
  10. 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. 11. Questions we still can’t answer Trauma • Disclosure • Protecting kids • Upset and sadness • Are we getting the same things out of this?
  12. 12. Questions we still can’t answer Relationships 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 can be positive to help us with our problems at home…’ Michael, 16.
  13. 13. Compound effects of abuse & parental AIDS on child risk of transactional 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. 14. Really useful texts and links: UNICEF Evaluation technical note ‘Children Participating in Research, M&E - Ethics & Your Responsibilities as a Manager. http://www.unicef.org/evaluation/files/TechNote1_Ethics.pdf Hart, Roger. 1992. Children’s Participation: from Tokenism to Citizenship. Innocenti Essays. No. 4. New York: UNICEF. http://www.unicef-irc.org/publications/pdf/childrens_participation.pdf Boyden, Jo and Judith Ennew (Eds.). 1997. Children in Focus: A Manual for Participatory Research with Children. http://www.gyerekesely.hu/childpoverty/docs/Children_in_focus_a_manual.pdf The UK National Health Service Young Persons Advisory Group http://www.mcrn.org.uk/children/design/ypag/96-national-young-persons-advisory-group The University of Texas Youth Advisory Group https://sph.uth.edu/tprc/youth-advisory-group/
  15. 15. Thank you. The Economic & HEARD, University National Department Social Research of KwaZulu-Natal of Social Development Council The National Research The Nuffield The Claude Leon The John Fell Foundation Foundation Foundation Fund
  16. 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 have gained, the different experiences we have had, the encouragement, and just to be with you guys. Don’t give up on us.’ TAG team message, 2011 www.youngcarers.org.za

Editor's Notes

  • Of the fourteen in the TAG teamTwo girls had babies (both were fourteen).One had been diagnosed HIV-positive. She was being moved to a rural area and was worried she couldn’t access ARVs thereFive had dropped out of school.
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