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Thesis (Ph. D.)--University of Texas at Austin, 2008. / Vita. Includes bibliographical references.

Background: Orphanhood is a major consequence of the HIV/AIDS epidemic in sub-Saharan Africa. There is little evidence concerning psychological problems for AIDS-orphaned children. This thesis explores the relationship between orphanhood status and mental health. It also examines mediating influences of environmental risk and protective factors, and interactions between factors, on children’s psychological problems. Methods: 1200 isiXhosa-speaking children were interviewed, using standardised questionnaires, in deprived urban settlements of Cape Town. A qualitative stage with 60 AIDS-orphaned children, 42 caregivers and 20 professionals explored participant perceptions of risk and protective factors. A quantitative stage compared 1025 AIDS-orphaned children to control groups of other-orphans and non-orphans. Data were analysed with t-tests, chi-sq, anovas, regression and log-linear analyses. The study took place in collaboration with Cape Town Child Welfare. Results: AIDS-orphaned children reported more depression (p<.001), peer relationship problems (p<.001), post-traumatic stress (p<.001), suicidal ideation (p<.05), delinquency (p<.001) and conduct problems (p<.001) than other-orphans and non-orphans. Anxiety showed no differences. Compared to Western norms, AIDS-orphaned children showed higher levels of internalising problems and delinquency, but lower levels of conduct problems. These differences remained when controlling for socio-demographic factors. A number of factors strongly mediated the relationship between AIDS-orphanhood and mental health. These include poverty-related factors (food, education and social security, p<.001). caregiving-related factors (caregiver illness, p<.001, excessive housework p<.001, being a streetchild, p<.001) and AIDS-related stigma (p<.001). Cumulative effects were also found. Food insecurity and AIDS-related stigma interacted to raise likelihood of disorder from 19% to 83%, and orphanhood status and bullying interacted to raise likelihood from 12% to 76%. Conclusions: This thesis shows clear evidence of heightened psychological problems amongst AIDS-orphaned children. It also indicates mediating factors and points to areas of possible intervention. The South African Ministry of Social Development plans to scale up the study to a national survey of AIDS-orphanhood.

Against the background of a dilemma experienced by researchers during a genomics study at an established biomedical research centre in Kenya, the broad aims of this thesis are to develop appropriate responses to important ethical questions on sharing information on a common and serious genetic condition, sickle cell disorder, and assess the responsibilities of researchers in this regard. Using an empirical approach to normative reflection across two phases of qualitative research, I explore the nature of important moral concerns related to sharing sickle cell disease information from researchers’ and community members’ points of view; and develop a bottom-up normative analysis around the questions generated. This analysis interweaves community experiences, processes of community reasoning and ex situ normative reflection; placing community views and values centrally while referencing these to wider ethical debates, commentaries and guidelines in the literature. Two main outputs of this thesis are to provide recommendations for information sharing on SCD findings in the genomics study in Kilifi; and to propose a set of key issues to consider for this type of information in other studies and geographic settings. I conclude that researchers have a strong responsibility to share SCD information on affected children with families as a form of ancillary service (validating tests, counselling and care); but less responsibility to actively share carrier information. Concurrent responsibilities are working collaboratively with the Ministry of Health/District General Hospital to plan and implement services for SCD; ensuring counselling services support family stability as far as reasonably possible; and to build forms of community engagement and informed consent that counter risks of diagnostic interpretations of research.

This dissertation fundamentally explores the nature of change, and the development interventions that aim to bring this change into a particular society. What emerges is the notion of a ‘spiral’: imagining the dynamic relationship between paradigms and discourses, the institutions and programmes operating in a place, and the way individual identities are constructed in intricate and contradictory ways. Within this spiral, discourse has power – ‘words matter’ – but equally significant is how these words interact dialogically with concrete social structures and institutions – ‘it takes more than changing words to change the world’. Furthermore, these changes are reacted to, and expressed in, the physical, sexed body. In essence, change is ideational, institutional, and embodied. To investigate the politics of change, this dissertation analyses the spiral relationships between gender discourses, institutions, and identities in contemporary Indonesia, focusing on their transmission across Java. It does so by exploring the Indonesian state’s gender policies in the context of globalisation, democratisation, and decentralisation. In this way, the lens of gender allows us to analyse the dynamic interactions between state and society, between ideas and institutions, which impact on everything from cultural structures to physical bodies. Research focuses on the gender policies of the Indonesian Ministry of Women’s Empowerment, substantiated with case study material from United Nations Population Fund reproductive health programmes in West Java. Employing a multi-level, multi-vocal theoretical framework, the thesis analyses gender discourses and relational structures (how discourses circulate to construct the Indonesian woman), gender institutions and social structures (how discourses are translated into programmes), and gender identities and embodied structures (how discourses enter the home and the body). Critically, studying gender requires analysing the human body as the site of both structural and symbolic power. This dissertation thus argues for renewed emphasis on a ‘politics of the body’, recognising that bodies are the material foundations from which gender discourses derive their naturalising power and hence ability to structure social relations. The danger of forgetting this politics of the body is that it allows for slippage between ‘gender’ and ‘women’; policy objectives cannot be disentangled from the reality of physical bodies and their social construction. This thesis therefore argues that there are distinct and even inverse impacts of gender policies in Indonesia. As the ‘liberal’ and ‘modern’ assumptions of gender equality are overlaid onto the patriarchal culture of a society undergoing transformation, women’s bodies and women’s sexuality are always and ever the focus of the social gaze. The gender policies and interventions affecting change on discursive and institutional levels may thus provoke reaction at the level of individual identities that are contrary to explicit intentions. In effect, projects that purport to work on ‘gender’ are often so deeply rooted in underlying gender normativity that their net effect is to reinscribe these gender hierarchies. By exposing the contradictions in these underlying paradigms we gain insight into the politics of a transforming society. Furthermore, engaging with the politics of the body allows us to analyse the spiral processes between discourse and practice, the question of power, and the way men and women embody social structures and experience social transformation.