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Ms. Sarah Skeen


skeenSarah Skeen is a public health project manager and PhD student.  She previously worked in mental health policy research, first as part of the Mental Health and Poverty Project at the University of Cape Town and then in the Department of Mental Health and Substance Abuse at the World Health Organisation.  She currently works for the Department of Psychology at Stellenbosch University, on projects focused on evaluating interventions for child development, mental health and psychosocial well-being.  Her interests include child and adolescent mental health, mental  health policy, and research communication.  She has a Masters in Public Health and is currently completing a PhD at the University of Cape Town.


Abstract Title

Social Connection, Stigma And Community Engagement In Community-based Programmes In South Africa And Malawi

Abstract text (max 2500 characters incl spaces):

HIV-related stigma has long been identified as an issue for adults living with the disease, but there has been limited research on its

impact on children. Stigma can affect children’s psychological well-being, while peer acceptance and social support may protect

children against its negative impact. Involving communities in HIV programming is increasingly recognised as central to reducing

stigma, but there is limited knowledge about how this support should be structured, and what forms of community-based

organisation (CBO) provision are best for children. The aim of this study was to investigate stigma, social connection and community

engagement reported by children and carers participating in CBO programmes. This study forms a part of the Child Community

Care study, a multi-country study of CBO provision to improve child outcomes. We interviewed 979 children and their carers

attending 28 CBOs for children affected by HIV, (randomly selected from a list of all CBOs supported by 10 partner foundations)

in South Africa and Malawi,. Stigma was measured using a set of indicators developed by UNICEF to track psychosocial outcomes

of vulnerable children, including child-report items on experience of stigma and social connection and carer-report items on the

community response to children affected by HIV/AIDS. Organisational leaders were interviewed on a range of organisational and

community measures using a questionnaire specifically developed for the study, based on qualitative interviews with key

stakeholders. We interviewed 476 boys (48.62%) and 503 girls (51.38%) girls, with a mean age of 8.97 years. Of the children,

11.17% reported that people make fun of their situation, and 10.31% reported that people speak badly about them. 11.17%

reported that no one in their communities cared about them. Boys tended to report higher levels of experienced stigma, but this was

not significant. On the other hand, high levels of positive social connection were reported, with 80.49% of children feeling that they

fitted in well, and 79.75%% reporting that they had many friends in their communities. 82.70% of children reported that they felt

proud of the community in which they live. Carers reported high levels of community support for CBO activities. 70.99% reported

that the local community supports the work of the CBO, with only 5.01% stating that the community makes things difficult for the

organisation. 27.48% stated that the community contributes to the organisation in some way, with 10.52% stating that the community

raises funds for the CBO. 93.46% reported that the adults in their community were generally concerned for the welfare of children

whose parents have HIV/AIDS. Low experience of stigma and high positive social connection outcomes for children were

significantly associated with participation in a CBO that was set up by the local community members (p=0.03), living in a community

that supported the organization (p=0.001), living in a community where community members actively contribute to the organisation

(p=0.033), where community members raised money for organisation work (p=0.046) and where adults did not maltreat children

whose parents have HIV/AIDS (p=0.04). This is cross-sectional data, and causal pathways cannot be assumed. Reported stigma

levels are low and it is possible that involvement in CBO programmes may reduce experiences of stigma for children. However,

within the sample there was a sub-group of children and adults who consistently reported experiencing stigma. Involvement of the

local community in CBO programmes may influence how children experience social support and stigmatising behaviours. CBOs are

an essential resource within communities and should work to engage their local community members in their activities to improve

social connection for children affected by HIV.



Track Descriptors

422 Track D: Socio-cultural factors and HIV: How does the social context influence behaviour? – D12 Family structures, kinship

and social safety nets for vulnerable groups (orphans, widows, others)

Young Investigator Award

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Young Investigator Award


Authors of the Abstract

Skeen, Sarah, University of Cape Town, South Africa (Presenting); Tomlinson, M., Mark, Stellenbosch University, South Africa;

Croome, N., Natasha, UCL, United Kingdom; Sherr, L., Lorraine, UCL, United Kingdom

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