Power-Laden (Mis)Understandings Surrounding Written Voluntary Informed Consent Procedures in Postcolonial Southern Africa

Written voluntary informed consent (VIC) procedures are the standard approach for operationalising the ethical principle of respect for persons’ autonomy in qualitative research. However, achieving fully informed and truly voluntary consent is challenging, particularly in qualitative research and/or postcolonial contexts. Evidence about (mis)understandings (i.e., unintended meanings) surrounding VIC comes primarily from participants in quantitative, biomedical research. I aim to advance knowledge about qualitative research participants’ (mis)understandings of VIC. I used ethnographic methods to document the evolving (mis)understandings participants attached to written VIC procedures in two postcolonial settings, Eswatini and South Africa. All participants provided me consent to document their interactions as co-researchers in participatory research, in which they learned about, designed and implemented VIC procedures. I analysed the data interpretively and abductively, informed by Bourdieu’s theory of practice. Participants valued the opportunity to decide and sign consent to participate but held (mis)understandings of study information and signing, which evolved as they participated. Many (mis)understandings were shaped by what the unfamiliar act of signing symbolised to them (i.e., binding, contractual agreements that protected the researcher/university and through which they relinquished their rights), from their positions of marginalisation amidst economic/material, cultural and social power inequalities. In postcolonial settings, requiring qualitative research participants to sign consent forms likely undermines the ethical principle of respect that VIC is intended to operationalise. Based on these findings I recommend alternative non-written procedures are used to operationalise the principle of respect in postcolonial qualitative research settings

Home Browse Protocol: the complexity of informal caregiving for Alzheimer's disease... ALL METRICS 67 VIEWS 9 DOWNLOADS Get PDF Get XML Cite Export Track Email Share ▬ STUDY PROTOCOL Protocol: the complexity of informal caregiving for Alzheimer's disease and related dementias in rural South Africa [version 1; peer review: awaiting peer review]

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

Loving the mess: navigating diversity and conflict in social values for sustainability

This paper concludes a special feature of Sustainability Science that explores a broad range of social value theoretical traditions, such as religious studies, social psychology, indigenous knowledge, economics, sociology, and philosophy. We introduce a novel transdisciplinary conceptual framework that revolves around concepts of ‘lenses’ and ‘tensions’ to help navigate value diversity. First, we consider the notion of lenses: perspectives on value and valuation along diverse dimensions that describe what values focus on, how their sociality is envisioned, and what epistemic and procedural assumptions are made. We characterise fourteen of such dimensions. This provides a foundation for exploration of seven areas of tension, between: (1) the values of individuals vs collectives; (2) values as discrete and held vs embedded and constructed; (3) value as static or changeable; (4) valuation as descriptive vs normative and transformative; (5) social vs relational values; (6) different rationalities and their relation to value integration; (7) degrees of acknowledgment of the role of power in navigating value conflicts. In doing so, we embrace the ‘mess’ of diversity, yet also provide a framework to organise this mess and support and encourage active transdisciplinary collaboration. We identify key research areas where such collaborations can be harnessed for sustainability transformation. Here it is crucial to understand how certain social value lenses are privileged over others and build capacity in decision-making for understanding and drawing on multiple value, epistemic and procedural lenses.Peer reviewe

Convalescent plasma in patients admitted to hospital with COVID-19 (RECOVERY): a randomised controlled, open-label, platform trial

SummaryBackground Azithromycin has been proposed as a treatment for COVID-19 on the basis of its immunomodulatoryactions. We aimed to evaluate the safety and efficacy of azithromycin in patients admitted to hospital with COVID-19.Methods In this randomised, controlled, open-label, adaptive platform trial (Randomised Evaluation of COVID-19Therapy [RECOVERY]), several possible treatments were compared with usual care in patients admitted to hospitalwith COVID-19 in the UK. The trial is underway at 176 hospitals in the UK. Eligible and consenting patients wererandomly allocated to either usual standard of care alone or usual standard of care plus azithromycin 500 mg once perday by mouth or intravenously for 10 days or until discharge (or allocation to one of the other RECOVERY treatmentgroups). Patients were assigned via web-based simple (unstratified) randomisation with allocation concealment andwere twice as likely to be randomly assigned to usual care than to any of the active treatment groups. Participants andlocal study staff were not masked to the allocated treatment, but all others involved in the trial were masked to theoutcome data during the trial. The primary outcome was 28-day all-cause mortality, assessed in the intention-to-treatpopulation. The trial is registered with ISRCTN, 50189673, and ClinicalTrials.gov, NCT04381936.Findings Between April 7 and Nov 27, 2020, of 16 442 patients enrolled in the RECOVERY trial, 9433 (57%) wereeligible and 7763 were included in the assessment of azithromycin. The mean age of these study participants was65·3 years (SD 15·7) and approximately a third were women (2944 [38%] of 7763). 2582 patients were randomlyallocated to receive azithromycin and 5181 patients were randomly allocated to usual care alone. Overall,561 (22%) patients allocated to azithromycin and 1162 (22%) patients allocated to usual care died within 28 days(rate ratio 0·97, 95% CI 0·87–1·07; p=0·50). No significant difference was seen in duration of hospital stay (median10 days [IQR 5 to >28] vs 11 days [5 to >28]) or the proportion of patients discharged from hospital alive within 28 days(rate ratio 1·04, 95% CI 0·98–1·10; p=0·19). Among those not on invasive mechanical ventilation at baseline, nosignificant difference was seen in the proportion meeting the composite endpoint of invasive mechanical ventilationor death (risk ratio 0·95, 95% CI 0·87–1·03; p=0·24).Interpretation In patients admitted to hospital with COVID-19, azithromycin did not improve survival or otherprespecified clinical outcomes. Azithromycin use in patients admitted to hospital with COVID-19 should be restrictedto patients in whom there is a clear antimicrobial indication

Multiorgan MRI findings after hospitalisation with COVID-19 in the UK (C-MORE): a prospective, multicentre, observational cohort study

Introduction: The multiorgan impact of moderate to severe coronavirus infections in the post-acute phase is still poorly understood. We aimed to evaluate the excess burden of multiorgan abnormalities after hospitalisation with COVID-19, evaluate their determinants, and explore associations with patient-related outcome measures. Methods: In a prospective, UK-wide, multicentre MRI follow-up study (C-MORE), adults (aged ≥18 years) discharged from hospital following COVID-19 who were included in Tier 2 of the Post-hospitalisation COVID-19 study (PHOSP-COVID) and contemporary controls with no evidence of previous COVID-19 (SARS-CoV-2 nucleocapsid antibody negative) underwent multiorgan MRI (lungs, heart, brain, liver, and kidneys) with quantitative and qualitative assessment of images and clinical adjudication when relevant. Individuals with end-stage renal failure or contraindications to MRI were excluded. Participants also underwent detailed recording of symptoms, and physiological and biochemical tests. The primary outcome was the excess burden of multiorgan abnormalities (two or more organs) relative to controls, with further adjustments for potential confounders. The C-MORE study is ongoing and is registered with ClinicalTrials.gov, NCT04510025. Findings: Of 2710 participants in Tier 2 of PHOSP-COVID, 531 were recruited across 13 UK-wide C-MORE sites. After exclusions, 259 C-MORE patients (mean age 57 years [SD 12]; 158 [61%] male and 101 [39%] female) who were discharged from hospital with PCR-confirmed or clinically diagnosed COVID-19 between March 1, 2020, and Nov 1, 2021, and 52 non-COVID-19 controls from the community (mean age 49 years [SD 14]; 30 [58%] male and 22 [42%] female) were included in the analysis. Patients were assessed at a median of 5·0 months (IQR 4·2–6·3) after hospital discharge. Compared with non-COVID-19 controls, patients were older, living with more obesity, and had more comorbidities. Multiorgan abnormalities on MRI were more frequent in patients than in controls (157 [61%] of 259 vs 14 [27%] of 52; p<0·0001) and independently associated with COVID-19 status (odds ratio [OR] 2·9 [95% CI 1·5–5·8]; padjusted=0·0023) after adjusting for relevant confounders. Compared with controls, patients were more likely to have MRI evidence of lung abnormalities (p=0·0001; parenchymal abnormalities), brain abnormalities (p<0·0001; more white matter hyperintensities and regional brain volume reduction), and kidney abnormalities (p=0·014; lower medullary T1 and loss of corticomedullary differentiation), whereas cardiac and liver MRI abnormalities were similar between patients and controls. Patients with multiorgan abnormalities were older (difference in mean age 7 years [95% CI 4–10]; mean age of 59·8 years [SD 11·7] with multiorgan abnormalities vs mean age of 52·8 years [11·9] without multiorgan abnormalities; p<0·0001), more likely to have three or more comorbidities (OR 2·47 [1·32–4·82]; padjusted=0·0059), and more likely to have a more severe acute infection (acute CRP >5mg/L, OR 3·55 [1·23–11·88]; padjusted=0·025) than those without multiorgan abnormalities. Presence of lung MRI abnormalities was associated with a two-fold higher risk of chest tightness, and multiorgan MRI abnormalities were associated with severe and very severe persistent physical and mental health impairment (PHOSP-COVID symptom clusters) after hospitalisation. Interpretation: After hospitalisation for COVID-19, people are at risk of multiorgan abnormalities in the medium term. Our findings emphasise the need for proactive multidisciplinary care pathways, with the potential for imaging to guide surveillance frequency and therapeutic stratification

‘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

Participatory action research for health capability in a Swazi community caring for children affected by HIV and AIDS- a project ethnography

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