Structural Influences on Consent Decisions in Participatory Health Research in Eswatini

Abstract

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.

Translating the consent form is the tip of the iceberg: using cognitive interviews to assess the barriers to informed consent in South African health facilities

“…21 Power imbalances within health care provision are well established; 22 so too is asymmetry in power relations in the context of decision-making and consent. 23 Drawing on data from a study in Eswatini, Brear et al 24 highlight the multiple structural influences that impact participation decisions, and argue that the consent interaction is “inherently power-laden”.…”