Comprehensive theories of health justice can supplement rights-based approaches like primary health care, by conceptualizing key terms, and systematizing knowledge about structural factors that influence health. Our aim was to use "health capability" as a theoretical lens for understanding how primary health care approaches might address structural factors impeding health in a rural Swazi community. We conducted abductive, interpretive, analysis of a mixed-method (QUAL+quan) data set about "health capability deprivations," generated through participatory action research. Four themes are discussed: illness and disease, unhealthy daily living environments, inability to move freely, and gendered expectations and norms. The analysis demonstrates that there were complex interrelationships between health capability deprivations, material and ideological deprivation prevented community members from aspiring to or securing their right to health, health capability theory can augment primary health care approaches and vice versa, and qualitatively driven, mixed-method research can generate unique insights about structural factors that influence health.
BackgroundCare of children affected by AIDS in Swaziland is predominately provided by families, with support from ‘community-based responses’. This approach is consistent with United Nations International Children’s Fund’s (UNICEF) framework for the protection, care and support of children affected by AIDS. However, the framework relies heavily on voluntary caregiving which is highly gendered. It pays limited attention to caregivers’ well-being or sustainable community development which enables more effective caregiving. As a result, the framework is incompatible with the social justice principles of primary health care, and the sustainable development goals (SDGs).AimOur aim was to examine the effects and gender dimensions of providing voluntary, community-based, care-related labour for children affected by AIDS.MethodsWe conducted multiple-methods research involving an ethnography and participatory health research, in a rural Swazi community. We analysed data related to community-based responses using an abductive, mixed-methods technique, informed by the capabilities approach to human development and a gender analysis framework.FindingsTwo community-based responses, ‘neighbourhood care points’ (facilities that provide children meals) and the ‘lihlombe lekukhalela’ (child protector) program were being implemented. The unpaid women workers at neighbourhood care points reported working in challenging conditions (eg, lacking labour-saving technologies), insufficient and diminishing material support (eg, no food), and receiving limited support from the broader community. Child protectors indicated their effectiveness was limited by lack of social power, relative to the perpetrators of child abuse. The results indicate that support for community-based responses will be enhanced by acknowledging and addressing the highly gendered nature of care-related labour and social power, and that increasing access to material resources including food, caregiver stipends and labour-saving technologies, is essential. These strategies will simultaneously contribute to the social and economic development of communities central to primary health care, and achieving the poverty, hunger, gender and work-related SDGs.
Addressing discriminatory gender norms is a prerequisite for preventing HIV in women, including young women. However, the gendered expectation that women will perform unpaid childcare-related labour is rarely conceptualised as influencing their HIV risk. Our aim was to learn from members of a rural Swazi community about how gendered childcare norms. We performed sequential, interpretive analysis of focus group discussion and demographic survey data, generated through participatory action research. The results showed that gendered childcare norms were firmly entrenched and intertwined with discriminatory norms regarding sexual behaviour. Participants perceived that caring for children constrained young women's educational opportunities and providing for children's material needs increased their economic requirements. Some young women were perceived to engage in "transactional sex" and depend financially on men, including "sugar daddies", to provide basic necessities like food for the children they cared for. Our results suggested that men were no longer fulfilling their traditional role of caring for children's material needs, despite women's traditional role of caring for their physical and emotional needs remaining firmly entrenched. The results indicate that innovative approaches to prevent HIV in young women should incorporate structural approaches that aim to transform gendered norms, economically empower women and implement policies guaranteeing women equal rights.
Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of “structural” coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers’ experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.
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