Conceptualisations of "good care" within informal caregiving networks for older people in rural South Africa.

Good care in social policy statements is commonly implied as familial and person-centred, provided by family members and focused on upholding the autonomy, dignity and respect of the care recipient. Policy consideration of the relational nature of caregiving, the sociomaterial determinants of good care, the practical knowledge of caregivers and responsibilities of the state, is limited. Drawing on the ethics of care theory and a care ecology framework, which conceptualises the dynamic interactions between formal and informal care "systems," we analysed ethnographic data of the interactions of 21 caregivers and their older care recipients in South Africa to understand how they conceptualised good care. Conceptualisations of good care included: having the right, altruistic and reciprocal, motivations; providing care frequently and consistently; and demonstrating hope for a better future through practical action. Caregivers also considered restricting autonomy a feature of good care, when doing so was perceived to be in the care recipient's best interest. Conceptualisations of good care were influenced by but also countered policy and cultural ideals. When they subverted policy values and practices, by overriding autonomy, for instance, caregivers' conceptualisations reflected their practical experiences of caregiving amidst gross material inadequacies, underpinned by deficiencies in the formal care system. We highlight the need for policies, interventions and theories of care that focus broadly on the care ecology and particularly on the "carescape" (formal care system). We advocate relational approaches that consider and balance the needs, desires and rights of caregivers and care recipients, and recognise caregivers' experiential knowledge, rather than person-centred approaches that focus exclusively on the care recipient.

Structural Influences on Consent Decisions in Participatory Health Research in Eswatini.

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.

Enhancing demographic survey protocols to characterise household dynamics that influence health - a participatory approach from rural Eswatini.

Standard Western demographic survey protocols fail to capture dynamics, such as circular migration and support networks, that profoundly influence the health of non-Western domestic social groups, typically called households. Enhanced protocols are needed because survey data provide the primary evidence base for health policy and planning globally. We present the participatory development, implementation and analysis of a novel demographic survey protocol, that aimed to better capture domestic social dynamics in rural Eswatini, southern Africa. The multiple-method study incorporated participatory health research about a community affected by HIV/AIDS, of which the survey formed part, and an ethnography of the participatory survey development process. Analysis of the data revealed limitations in the reliability and validity of standardised survey questions for measuring household membership, in contexts where circular migration and polygamy are common. Standard survey protocols potentiate double-counting members and misclassifying 'child-headed' and 'female-headed' households. They neglect social and economic dynamics that are known to influence health. Our novel demographic survey protocol provides a simple alternative method for capturing core data about circular migration and its impact on health. The study illustrates the contributions participatory and ethnographic research can make to enhancing demographic surveys.

Ethical tensions surrounding 'third-party disclosure' by participants: Lessons from participatory health research in Eswatini.

Third-party disclosure by participants is inherent to much global health research. It presents ethical tensions with respecting the autonomy and privacy of non-consenting individuals whose data are disclosed but is neglected in ethics guidelines. Our aim was to describe and ethically reflect on, third party disclosure in a community-participatory demographic and health survey (DHS) implemented within participatory health research (PHR) about community-based care of children affected by AIDS in Eswatini. We collected DHS data and analysed it statistically. We studied the PHR process and outcomes ethnographically and analysed the data interpretively, using theories that conceptualise secrecy as relational and power-laden. We found that third parties' data were disclosed by DHS respondents (typically women), including data about health conditions, abuse perpetration and being a caregiving burden. Ethnographic findings suggested that some third parties may not have consented to us collecting their data. However, respecting third parties' autonomy and privacy presents ethical tensions related to silencing survey respondents and impairing knowledge creation. To minimise the ethical tensions surrounding third-party disclosure researchers can analyse risks, benefits and power dynamics and extend their ethical responsibilities to protect participants to also protect non-participants, and from data collection to also include reporting.

Community participation in health research: an ethnography from rural Swaziland.

Community participation in all aspects of health research is widely advocated. However, there is a lack of specificity in reporting what community members actually do, and reported participation is typically limited to discrete research activities. Greater specificity in reporting has potential to clarify how community participation might occur and how it might influence empowerment and research rigour. We conducted an ethnographic study of participatory health research (PHR) in a socio-economically marginalized rural Swazi community. Data about 10 community co-researchers' participation in research workshops and field work were collected through participant observation over 14 months and analysed using directed content analysis, informed by the Comprehensive Community Participation in Research Framework (CCPRF). The analysis demonstrated that facilitating extensive community participation in PHR is feasible and identified 10 new research process activities in which community members might participate, for inclusion in an expanded CCPRF. We provide examples of how community members might participate in 57/59 expanded CCPRF activities and show that participatory, dialogue-based activities can be effective tools for facilitating research participation in ways that empower individual co-researchers and enhance research rigour. However, our results highlight limitations of community participation related to utilizing research results to inform actions, and empowering communities to control their environments and improve their health.

Community-based care of children affected by AIDS in Swaziland: a gender-aware analysis.

BACKGROUND: Care 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. METHODS: We 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.

Health Capability Deprivations in a Rural Swazi Community: Understanding Complexity With Theoretically Informed, Qualitatively Driven, Mixed-Method Design, Participatory Action Research.

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.

Gendered childcare norms - evidence from rural Swaziland to inform innovative structural HIV prevention approaches for young women.

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.

Gendered childcare norms ­ evidence from rural Swaziland to inform innovative structural HIV prevention approaches for young women

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