Loaded meanings of signing qualitative research consent forms in postcolonial southern Africa
Abstract
Voluntary informed consent (VIC) procedures are intended to translate the principle of respect for persons into ethical research practice (Hoeyer & Hogle, 2014). Typically, potential research participants are provided written study information (e.g. about plausible risks and benefits, their right to decline or withdraw) and asked to sign quasi-legal forms affirming their consent, if they agree to participate. These procedures, which are expected by ethical review boards (Librett & Perrone, 2010), assume that potential participants will properly understand written information, and once informed, be able to provide consent voluntarily (autonomously and without coercion) (Afolabi et al., 2014). However, in postcolonial quantitative research consenting participants often misunderstand study information (Tam et al., 2015) and/or feel like they cannot say no (Molyneux, Wassenaar, Peshu, & Marsh, 2005). Evidence regarding (mis)understandings about VIC amongst qualitative research participants, which could be used to optimise ethical procedures and guidelines, is limited. My aim is to conceptualise if and why (mis)understandings related to VIC procedures occur amongst qualitative research participants in postcolonial settings.
I documented the experiences of 18 participants who provided VIC for me to collect ethnographic data about their interactions as community co-researchers in one of two participatory action research (PAR) projects. The projects, which occurred in two postcolonial, southern African nations, Eswatini and South Africa, received separate ethical approvals. I used participant observation to record my perspectives of the co-researchers’ interactions in participatory workshops (as described in (Brear, Hammarberg, & Fisher, 2019), which I designed and implemented to facilitate co-designing and co-implementing the PARs. Each project involved workshop activities in which the participants designed ethical procedures for their PAR and reflected on their experiences giving VIC as ethnographic research participants and obtaining VIC from community member participants in their PAR. I supplemented my participant observation data with interviews (South Africa) and focus groups discussions (Eswatini). Analysis of the combined data followed an abductive approach (Timmermans & Tavory, 2012) through which I identified recurring, novel and anomalous ideas, themes and phenomena and developed and refined possible theoretical interpretations of them, as I iteratively read and contrasted the empirical data and research ethics literature. My analysis was guided by Bourdieusian theory, which posits that everyday practices are informed by the practical logic of habitus, a construct that represents embodied historical experiences and their structured-structuring effects (Bourdieu, 1990).
Participants valued the opportunity to sign and decide for themselves about participation. However, all participants misunderstood at least one aspect of study participation when they signed their consent form. Several reported signing despite not properly understanding (e.g. “my intention was to participate [but I wondered, by signing] am I not handing you, the facilitator great power to illtreat me” (Male, Eswatini)). Some expected benefits that were not mentioned in the study information (e.g. “To sign… It’s like are you giving me a part time job” (Male, South Africa)). Many held the equivalent of what biomedical researchers label “therapeutic misconceptions”, that is, they assumed benefits, albeit educational not medicinal (e.g. “[a] taste of being at the university, being taught by… Dr Michelle (Male, South Africa)). Most participants perceived signing to be a quasi-legal, binding arrangement that signified their intention to cooperate with my research agenda (e.g. “a witness that the participant… will follow everything that is involved in the research” (Male, Eswatini). Some did not believe information they recalled reading about their right to decline or withdraw (e.g. “[I thought] of that as something written on the form [not]… the reality of what would actually happen” (Female, South Africa)). Participants’ understandings of the protective and respectful intentions of VIC developed as they experienced the workshops and watched me collect and heard me talk about my participant observation data. My reiterations of study information and presentations of research ethics theory also contributed to the participants better understanding the intent of VIC. For example, one reported, “I’ve learned… [that when] researching we are not forcing someone to answer” (Female, Eswatini).
The participants’ misunderstandings were logical responses to their historical experiences (embodied as habitus) of hearing empty promises; signing away their rights; and/or having limited autonomy. For example, participants in South Africa spoke of their ancestors being tricked into signing over their land in the Apartheid-era. Those in Eswatini discussed how it was considered disrespectful to refuse participation in their chiefdom community. Participants’ misunderstandings were also structured by their desire for opportunities associated with power, including working for pay, going to university and/or signing forms, from which they had historically been excluded.
These findings extend current knowledge of participant misunderstandings regarding VIC, by theoretically conceptualising why such misunderstandings arise in qualitative research. They suggest that in postcolonial contexts, the practice of signing forms is imbued with meanings that have little correspondence with the intention of VIC (i.e. respecting people’s autonomy). Given the power inequalities and deception that characterised the colonial- , and continue to characterise the postcolonial-era (Smith, 2013), participants’ tendencies to tacitly disregard written information which contradicted their lived experiences and/or assume benefits despite not fully understanding and/or perceiving potential for ill-treatment, theoretically represent logical and strategically calculated manoeuvres aimed at seizing whatever limited opportunities presented themselves (Bourdieu, 1990). Such manoeuvres arise due to lack of correspondence between the participants’ habitus and the field of academic research and ethics, in which they wanted to participate because of the opportunity they perceived it represented. Structured by the participants’ habitus these manoeuvres also structured their habitus to expect and respond differently in future situations, for example, to expect autonomy and understand they really can say no to future research.
The results demonstrate that asking participants in postcolonial contexts to sign quasi-legal consent forms may introduce or exacerbate misunderstandings that undermine, rather than achieve, the intention of respecting participants’ autonomy. Because the act of signing is imbued with divergent meanings structured by lived experiences, providing more or better written study information is unlikely to ensure participants’ consent is either more informed or voluntary. Incorporating lived experiences that enable participants to understand firsthand the respectful intentions of VIC, can enhance ethical rigour in longitudinal qualitative studies like ethnographies.