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This study represents a collaboration between Oxford
University, the South African National Ministry of Social Development
(Directorate of HIV/AIDS and Directorate of Children) and key NGOs (Save the
Children, UNICEF, Cape Town Child Welfare). In order to directly include
participant groups in the study design, we have established a ‘Teen Advisory
Group (‘TAG Team’) of 12 AIDS-affected children. Through workshops and
residential weekends, this group of children have contributed to questionnaire
design and style, and advised on the wording of sensitive items.
Collaboration is an important part of the Young Carers project. It encourages collaborator input and investment, fostering long-term commitments. Findings will be disseminated to all collaborators, and all stakeholders will be involved in further dissemination. Collaboration, particularly with representatives of Young Carers, takes note of social inequalities that exist in such a large-scale project between the various stakeholders and carers. Collaboration gives voice to groups who would otherwise be targets of research and intervention, rather than as the partners they are.
This study is jointly supported by a number
of universities:
Department of Social Policy and Social Work, University of Oxford
Department of Community Health, Brown University
Health Economics and HIV/AIDS Research Division, University of Kwazulu-Natal
Government: South African Department of Social Development
An important way to ensure that research is policy-relevant is to ask policy-makers to identify what will be valuable information. This study has collaborated closely with government from the conceptualisation stage. Regular joint meetings have allowed input from the Department of Social Development, the Departments of Education, Health and Agriculture (and the National Action Committee... National Action Committee for Children Affected by AIDS).
NACCA (National Action Committee for Children Affected by HIV & AIDS)
The National Action Committee for Children Affected
by AIDS (NACCA) is a permanent coordinating
structure of government departments,
civil society, business and development agencies,
lead by the Department of Social Development.
NACCA’s mandate under the Policy Framework
for Orphans and other Children Affected
by HIV and AIDS is to: “Facilitate and coordinate
mechanisms at national, provincial, district and
community levels, to alleviate the impact of HIV
and AIDS on the lives of children.”
NACCA has had input into the design of the study,
outcomes and risk factors to be included, both
at early stages through their Research Steering
Committee, and at the NACCA annual meeting.
Direct service providers: Cape Town Child Welfare
Direct service providers are often at the cutting
edge of identifying key needs and risks for children.
In the very early planning stages, NGOs (Cape
Town Child Welfare, Ikamva Labantu, Planned Parenthood
South Africa, USAID, UNICEF) were consulted,
as were state service providers (state social
services, TB and HIV clinics, Home-Based Care coordinators,
government schools). These initial consultations
have allowed continual collaboration,
and the design of feedback mechanisms which will
suit these groups.
Teen Advisory Group (TAG)
Children who are caring for sick family members are the focus of the Young Carers research.
The project has also sought ways to involve Young Carers as stakeholders in the project’s
design, alongside other stakeholders such as schools, NGOs and government.
The research team has established a Teen Advisory Group (TAG) of 11 children drawn from
target communities in the study that could be consulted throughout the research period. An
initial workshop was held in September 2008 in Cape Town, when 11 children who are acting
as Young Carers were brought together for a weekend away.
Young Carers is not a community-led or participatory study, where a community determines
the content and structure of research. Such studies focus on specific communities and tend
not to have pre-determined policy objectives. Young Carers aims to inform national policy
interventions for children caring for sick families. The study will thus be based on both
qualitative research and large-scale survey research through a representative sample of a
number of provinces.
However, within the constraints of a broad research question and research design determined
by government, Young Carers aims to give children caring for sick family members a
large role in determining the *content of research* and *how research is conducted*.
On the weekend away, children had large periods of semi-structured time in small group
exercises with researchers. Children shared details of the tasks they were undertaking at
home, how their responsibilities had increased and how families were coping with disclosure.
Researchers gained a more intimate picture of the challenges facing families with sick
members, a picture which determined the *content of research* by giving the basis for the
quantitative questionnaire. Secondly, researchers understood some of the policy interventions
targeted at families – grants, school feeding schemes and support groups – and difficulties
with their implementation. This both affirmed the importance of the research question
and provided new directions of enquiry.
In giving feedback on *how research is conducted,* children did a mini-pilot of the qualitative
questionnaire, which resulted in substantive changes to its content. They did an informal
session where they gave ideas on the design of the qualitative questionnaire, which
resulted in its design as a teen magazine. Finally, they discussed how the study should approach
sensitive questions and HIV testing.
The TAG’s input was incorporated into various levels of the study and the research team
will continue to consult with the TAG as the study continues. The exercise is also valuable
for children in and of itself: in evaluation, the children said they had had a lot of fun and
gained strength from the opportunity to share their experiences. They hoped to continue to
be involved in future.
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