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. 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. 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 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

8. 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.

9. 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!

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

11. 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…

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

13. 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.

14. 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

15. 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/

16. 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

18. ‘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