Participatory action research for health capability in a Swazi community caring for children affected by HIV and AIDS- a project ethnography
Creators: name: Brear, Michelle Rhonda
Publisher: name: Monash University
Year: 2017
Subjects: subject: 111712 Health Promotion
subject: FOS: Health sciences
subject: FOS: Health sciences

description: This thesis provides an ethnographic account, and reports the findings, of qualitatively-driven mixed-methods participatory action research (PAR) for health capability. The research aims were to generate knowledge about: (1) the process and outcomes of PAR, including empowerment; and (2) health capability, its enablers and deprivations; in a community caring for children affected by HIV and AIDS. Participatory action research aims for empowering community participation in all aspects of the research process. Health capability is a social justice philosophy that conceives health as the realisation of civil, social, economic and political entitlements. <br> The research was conducted over an 18 month period, in partnership with lay “co-researchers” from a rural Swazi community caring for children affected by HIV and AIDS. The ethnography involved 76 instances of participant observation of, and 22 focus group discussions about, the dynamics of participation in, and the knowledge creation and human development (particularly empowerment) outcomes of, the PAR process. The PAR involved a demographic and health census of the population and 18 focus group discussions about health capability in the community. <br> Co-researchers participated in numerous activities in each aspect of the PAR process. Their participation had negative and positive, knowledge creation and human development outcomes. It enabled the development of a unique sampling technique and research instruments that captured emic (community) perspectives and enhanced the PAR’s cultural sensitivity. However, there were possible tensions between cultural sensitivity and implementing scientifically and ethically rigorous PAR, in a culture where gender equality, voluntary informed consent and participatory governance were unfamiliar concepts. Positive human development outcomes reminiscent of empowerment occurred for co-researchers but were limited for the community as a whole, due to lack of material resources. Health capability deprivations in the community were widespread, and associated with poverty, lack of material resources and modern infrastructure, and discriminatory norms, including over-reliance on the unpaid labour of marginalised community members, particularly women. <br> The ethnographic and PAR findings demonstrate that, from the perspective of community members and co-researchers, empowerment, as a multidimensional theoretical construct should be conceived as: a process of human development towards; and/or an outcome representing the realisation of, health capability for all. For co-researchers, individual empowerment transcended the previously hypothesised personal, psychological processes; it also involved interactions with, and emotional responses to, others. The results indicate that organisational and community empowerment are both forms of group empowerment that depend on the groups’ values, and expertise and the actions and interactions they have opportunities to, and actually do, engage in. <br> Empowering groups, including communities caring for children affected by HIV and AIDS, is a long term human development process that must involve the exchange of social and material resources, which enhance health capability for all, including children’s caregivers. Extensive participation in PAR can enhance scientific knowledge creation and contribute to the empowerment of co-researchers. However, it does not negate the need for improved access to material resources to create enabling environments and secure empowerment, that is, health capability for all, in communities caring for children affected by HIV and AIDS.