Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa.

Practice theories offer potential to reveal, understand, and attribute value to the everyday thoughts and actions of dementia caregivers. Drawing on ethnographic data from research in rural South Africa, on everyday dementia care practices, we highlight the profound importance of mundane practices - especially "sitting in wait" - for optimizing wellbeing of people with dementia who are cared for at home. We draw attention to the structural drivers of homebased (informal) care, which is underpinned by state inaction. This situates the act of sitting in wait as both an act of care and an embodied form of structural powerlessness.

Distribution of informal caregiving for older adults living with or at risk of cognitive decline within and beyond family in rural South Africa.

Objectives: Aging populations in rural areas of low and middle-income countries will increasingly need care. However, formal support is severely limited and adult children are frequently unavailable due to morbidity, early mortality, employment and migration. We aimed to describe how care is shared within and between households for older adults in a rural South African setting. Methods: We conducted quantitative interviews with 1012 household members and non-household caregivers of 106 older adults living with or at risk of cognitive decline in rural Mpumalanga, South Africa. Using descriptive statistics and regression analysis, we described how care is shared, with particular attention to generational patterns of care. Results: Informal care for older persons was spread among family, friends, and neighbours, with minimal paid support. This care was mostly provided by female relatives one or two generations younger than the recipient, and unemployed. However, a smaller number of paid caregivers, also mostly female, provided the most intensive care. Spouses commonly took on the role of primary caregiver for their partner. Discussion: In our study, care mainly came from household members due to close family ties and practical considerations, with support from outside the household. This reflects shared history, reciprocal relationships, and easy access to care tasks within the household. A deeper understanding of how informal care for older adults is shared in low- and middle-income countries is essential for developing targeted interventions.

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.

Invited Commentary on "Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?"

Bridget Pratt and Adrian Harper ( 2021) conducted a comparison of articles identified through six electronic literature searches. Their aim was to "identify ethics literature… that discussed combatting neo-colonial models of research". They used manifest content analysis to compare the conceptual content of articles from the fields of global health (GH) and Australian Aboriginal health (AH). This innovative application of a literature review approach from literary and media studies, to health sciences in which literature reviews have traditionally focused on synthesizing evidence about intervention effectiveness, should be commended. It has potential to advance theoretical understandings of ethics in health research. However, I argue here that Pratt and Harper's (2021) search strategy has several weaknesses, which suggests that their results must be interpreted with caution.

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.

Protocol: the complexity of informal caregiving for Alzheimer's disease and related dementias in rural South Africa.

BACKGROUND:  With aging, many people develop Alzheimer's disease or related dementias (ADRD) as well as chronic physical health problems. The consequent care needs can be complicated, with heavy demands on families, households and communities, especially in resource-constrained settings with limited formal care services. However, research on ADRD caregiving is largely limited to primary caregivers and high-income countries. Our objectives are to analyse in a rural setting in South Africa: (1) how extended households provide care to people with ADRD; and (2) how the health and wellbeing of all caregivers are affected by care roles. METHODS:  The study will take place at the Agincourt health and socio-demographic surveillance system site of the MRC/Wits Rural Public Health and Health Transitions Research Unit in Mpumalanga Province, northeast South Africa. We will recruit 100 index individuals predicted to currently have ADRD or cognitive impairment using data from a recent dementia survey. Quantitative surveys will be conducted with each index person's nominated primary caregiver, all other household members aged over 12, and caregiving non-resident kin and non-kin to determine how care and health are patterned across household networks. Qualitative data will be generated through participant observation and in-depth interviews with caregivers, select community health workers and key informants. Combining epidemiological, demographic and anthropological methods, we will build a rich picture of households of people with ADRD, focused on caregiving demands and capacity, and of caregiving's effects on health. DISCUSSION:  Our goal is to identify ways to mitigate the negative impacts of long-term informal caregiving for ADRD when formal supports are largely absent. We expect our findings to inform the development of locally relevant and community-oriented interventions to improve the health of caregivers and recipients, with implications for other resource-constrained settings in both higher- and lower-income countries.

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.

Process and Outcomes of a Recursive, Dialogic Member Checking Approach: A Project Ethnography.

There is limited empirical evidence about member checking, a long-standing qualitative research technique for establishing validity. I conducted directed content analysis of ethnographic data detailing the process and outcomes of a "dialogic" member checking approach I implemented in rural Swaziland. It involved 10 participants, checking results about their participation and empowerment as co-researchers in participatory health research. The process involved participants in four recurring stages: thinking independently, hearing findings, appraising findings, and negotiating final representations. It increased the transferability and accuracy ("transactional" validity) of the results by adding richly descriptive data and establishing the extent of participant agreement with my findings. It had emancipatory outcomes ("transformational" validity) including developing critical understandings, influencing the research trajectory to "give voice" to participants, and establishing more equitable researcher-researched relationships. Further development, implementation, and appraisal of recursive, dialogic approaches can advance member checking as a technique for enhancing "holistic" validity in qualitative health research.

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.

Ethical Research Practice or Undue Influence? Symbolic Power in Community- and Individual-Level Informed Consent Processes in Community-Based Participatory Research in Swaziland.

In community-based participatory research (CBPR), community-level consent is assumed to enhance ethical rigor, when obtained prior to individual informed consent. However, community leaders' permission to conduct research may influence individuals' agency to decline participation. This article presents findings of a Bourdieusian analysis of ethnographic data documenting CBPR in rural Swaziland. The findings reveal that the "symbolic power" of leaders who provide community-level consent constrains individual agency and reproduces existing relations of power, if individual informed consent is simply a procedure. However, when informed consent is a process that introduces notions of autonomy and rights, it can disrupt power relations. Implications for ethical CBPR practice, and ethnography's value for developing theory from real-world research ethics practice, are discussed.

Community participation in research from resource-constrained countries: a scoping review.

Participatory health research (PHR) involves equitable community participation in all aspects of the research process. It is a potentially beneficial approach to research in resource-constrained countries. Measuring participation in specific activities and aspects is necessary for understanding the community and research-related benefits of PHR. The aims of this scoping review were to: develop a measure of lay-community participation in aspects and activities of PHR in resource-constrained countries; and use the measure to assess the nature and extent of reported participation. Directed content analysis was used to identify aspects and activities reported in peer-reviewed articles identified through a systematic search, develop the Comprehensive Community Participation in Research Framework (CCPRF) and use it to measure participation. Total and aspect participation scores, which considered both the nature and extent of participation, were calculated for articles reporting extensive participation. Eighty-five articles detailing 66 studies were included. Nine aspects and 49 activities of research were included in the CCPRF. Community participation was reported in a median of 5/9 (range 1-9) aspects and 8/49 (range 1-35) activities. The review provided diverse examples, and enabled development of a more comprehensive measure, of participation. It highlighted limited lay-community participation is reported in research labelled participatory from resource-constrained countries. As participation in all aspects of PHR is rarely achieved, strategic planning of more limited participation is imperative. More detailed and systematic planning, assessment and reporting of participation, guided by a comprehensive measure like the CCPRF, is required to develop evidence regarding the benefits of participation in various research activities.

'I was thinking we would be spoon-fed': Community co-researchers' perceptions of individual empowerment in participatory health research in Swaziland.

Empowerment is an influential concept in global public health. Current theoretical models, which were developed in resource-rich countries, conceptualise individual-level empowerment as a process (or outcome) of developing positive self-perceptions, critical thinking expertise and new behaviours. They neglect the social and structural aspects that were central to early conceptualisations of empowerment, and may be culturally biased. My aim was to elucidate lay-people in Swaziland's perspectives about individual-level empowerment. Twenty-one focus group discussions with lay-community 'co-researchers' were collected longitudinally over 14 months of a participatory health research process. Findings generated using interpretive analysis of epiphanies highlighted the salience of socio-historic context, in limiting the co-researchers' expectations and experiences, and shaping their perceptions, of empowerment. The findings demonstrate that the co-researchers perceived: working independently and collaboratively; developing new perceptions of others, and technical (health and research) expertise; using expertise to take action; and accessing material resources were important aspects of empowerment. They indicate that individual-level empowerment models utilised in global public health might be enhanced by incorporating social and structural dimensions. These dimensions are needed to capture the relations and interactions which mediate socially excluded people's agency to access the social and material resources needed to secure their right to 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.

Perspectives on intimate partner violence in Swaziland amongst 18-29-year-old men undergoing medical circumcision.

Intimate partner violence (IPV) is perceived as a major contributor to HIV transmission in Swaziland. This exploratory study aimed to develop a culturally-specific understanding of men's perspectives of IPV. Focus group methods were used to gather information from 45 young urban Swazi men who had undergone medical male circumcision. A thematic analysis was conducted focussing on the manifestations of IPV and socio-cultural and economic factors which underpin, circumstances which trigger and social responses to IPV. The study identified numerous forms of economic, physical, emotional and sexual abuse that study participants perceived men used to control women in Swaziland. Many of these directly increased a woman's risk of HIV infection, including knowingly infecting a woman with HIV and intentionally impregnating a woman, a practice that has not previously been highlighted in the literature. Aspects of Swazi culture that may facilitate these particular forms of abuse are discussed. This study highlights the need for the gender issues which underpin IPV to be addressed in HIV prevention in Swaziland and for the development of an informed understanding of how and why IPV occurs in the Swazi context.

Impact of an ultrabroadband emergency department telemedicine system on the care of acutely ill patients and clinicians' work.

OBJECTIVES: To evaluate whether introduction of an emergency department (ED) telemedicine system changed patient management and outcome indicators and to investigate clinicians' perceptions of the impact of the system on care provided and on their work. DESIGN: Before-and-after study of use of the Virtual Critical Care Unit (ViCCU), which uses an ultrabroadband connection allowing real-time audiovisual communication between clinicians at distant sites. Semi-structured interviews were conducted with medical and nursing staff at the end of the study. PARTICIPANTS AND SETTING: The ViCCU intervention commenced on 1 January 2004. Our study was conducted in the EDs of an 85-bed district hospital and a 420-bed metropolitan tertiary hospital. It involved all acutely ill patients requiring urgent care (defined by triage category and grouped into critical care, major trauma and moderate trauma) who were treated during the 12 months before (n=169) and 18 months after (n=181) the intervention at the district hospital. Thirty-one of 33 clinicians (doctors and nurses) participating at the two hospitals took part in interviews at the end of the study. MAIN OUTCOME MEASURES: Changes in patterns of management (disposition [admission, discharge or transfer], treatment times, number of procedures) and outcomes (rapid acute physiology scores, hours on ventilation or in intensive care, length of stay). RESULTS: Patient disposition remained unaltered for major trauma patients. For critical care patients, admissions fell significantly (54% to 30%), transfers increased (21% to 39%), and more procedures were performed. For moderate trauma patients, discharges increased significantly (45% to 63%), transfers decreased (48% to 25%) and treatment times were longer. No significant changes were found in outcome indicators. Clinicians reported that the ViCCU allowed greater support to remote clinicians. Specialists reported increased workloads and feelings of greater responsibility for patients at the district hospital. Nurses at the district site reported reduced stress, but district doctors reported some loss of autonomy. CONCLUSIONS: The ViCCU appears most effective for moderate trauma patients, with associated reductions in admissions and transfers. Large-scale trials of telemedicine systems that include measurements of both patient care and impact on clinicians' work are required.

Evaluating telemedicine: lessons and challenges.

Telemedicine applications have been rapidly implemented since the early 1990s and are now in use in a wide range of healthcare settings. There is, however, limited evidence of clinical benefits resulting from their use. this paper describes the design and implementation of a multi-method evaluation of an emergency telemedicine applications clinical impact. In particular, the challenges faced and lessons learnt regarding the development of a suitable methodology and collection of health information from a variety of sources are discussed. In order to understand the applications clinical impact it was necessary to use different types of data from multiple sources, and to interpret the results from each enquiry in relation to results from the others.