Co-producing culturally responsive consent in research

What happens when approaches for consent are co-produced by communities with local researchers and mental health and psychosocial support workers responding to their values, instead of embedding Western concepts that can have unintended consequences far beyond this first formal step of participation? GOAL partners at the Lebanese National Mental Health Programme, War Child and BeyondText are curious about whether more participatory approaches to consent, beyond traditional text-based materials, might be more effective at developing trust, understanding and participation, ultimately helping to create the conditions for more relevant research and interventions and a stronger mental health and psychosocial support (MHPSS) system in Lebanon.

What’s the problem with current consenting approaches?

Consent practices from Western research institutions reflect rules-based, individualistic, low-context values. These are often at odds with cultures characterised by collectivist, high-context communication and relationships including many Arab cultures where concepts of consent, autonomy, anonymity, confidentiality, permission-giving and privacy are understood very differently.

Applying Western institutional practices of consent in Arab and refugee contexts may erode trust and generate less relevant, less legitimate and lower-quality research that fails to lead to improvements in policies and interventions. Examples of issues with standard consent materials used in Arab cultures include consent forms being perceived by participants as legal contracts, which may be confusing or distrusted, and signatures being seen as indicating a lack of trust, potentially even considered insulting due to their association with occasions of marriage and financial and juridical procedures.

A survey with Syrian communities found these issues were not insurmountable in current consent approaches, but the researcher must navigate these issues skilfully throughout the consent journey. A review of ethical standards for MHPSS in emergencies calls for informed consent (IC) to move away from:

procedural, juridical and ritualised consent to avoid ‘a crude version of the biomedical model of consent: the dialogue should not be seen as merely … making the informant understand and accept a pre-defined research package’.

Making current consent materials culturally responsive can be challenging and burdensome for researchers, particularly where time and resources are limited. This raises the question of whether standard consenting materials and approaches enable good practice, or act as a barrier to it. What might culturally responsive approaches to IC look like? How can we design culturally responsive approaches more effectively?

What is meaningful participation in culturally appropriate informed consent?

While Design Thinking (DT) has been found to help create the conditions for more meaningful involvement in IC and has been used in Arab contexts, some of us in the GOAL partnership were unsure; in our experience of DT projects they often stall after the (admittedly interesting) mapping stage, struggle to create workable solutions or face insurmountable barriers to implementation.

Our experience of DT has been reflective of the wider trend over the last decade or two of applying Silicon Valley’s innovation approaches in non-governmental organisation contexts, aiming to solve complex problems with little impact. Some argue that this reveals not only that these innovation approaches are best suited to simplistic challenges like creating (yet another) app, but also that the effectiveness of these approaches is as over-stated as the ‘made-up’ valuations of the Silicon Valley unicorns pioneering these approaches. Worse still, and particularly when used in development, these innovation approaches weren’t designed with, by or for people in the context, and aren’t concerned with power or structural inequalities. As a result, they risk exacerbating the very issues they seek to address.

DT’s conceptualisation of beneficiaries as people to be researched on, not with, is another tension in the meaningful participation of communities throughout the process. And of course, DT is yet another Western practice reflecting Western values.

To engage with these serious shortcomings, while trying to unlock the potential of DT to close the gap between theory and practice, we’re using Elrha’s Participation For Humanitarian Innovation toolkit, a design tool that is sensitive to context, power and the complexity inherent to development challenges.

Who is consent being designed by, with and for?

In Lebanon, a team of researchers is working with Imad Abou Khalil, a Palestinian-Lebanese DT practitioner, to explore the issue of IC in MHPSS services. The first step in engaging the community will be to use the Elrha toolkit to facilitate conversations about what meaningful participation in the process means to the community, inviting them to frame the challenges and think through how they would like to participate in developing solutions. These are both areas identified as key opportunities for deepening participatory research with communities from conflict-affected and forcibly displaced communities in humanitarian healthcare responses.

Our initial experiences of testing the Elrha tools in practice found that they:

surface rich conversations at a transformative level we’ve rarely encountered previously, going to the heart of issues of power and context in a manner that was structured, specific and simple, without being simplistic (Imad Abou Khalil, Design Thinking practitioner, Lebanon).

What might solutions look like?

To ensure we learn from existing practice and avoid duplication, our initial literature review and

survey of GOAL partners sought to understand current enablers and barriers to culturally responsive

IC and identify existing solutions that might be adapted. The review found a paucity of literature on culturally responsive IC in Arab cultures. More broadly, it highlighted the following:

• The crucial role of dialogue between participants and researchers.
• This dialogue may be enabled by more interactive and/or participatory forms of IC, potentially incorporating roleplay, audio and visual materials, mutual agreements or other formats.
• All IC materials and processes must be culturally responsive, tailored to values, and gender and sociocultural dimensions.

While findings are tentative, due to the limited number and heterogeneity of the studies and the lack of cultural relevance, research from societies with characteristics comparable to those in Arab contexts found that improvements should focus on redesigning the mechanism of IC, while the broad components of the content can remain (e.g. information for the participant about the research and a tool to document culturally appropriate consent). This suggests that culturally appropriate IC would meet ethics review board requirements. Indeed, these approaches arguably seek to not only realise ethical commitments more effectively, but could also contribute to building research and MHPSS capacities more broadly.

GOAL is funded by the UK’s Global Challenges Research Fund (GCRF). GOAL seeks to support health system responsiveness to the mental health needs of people affected by protracted displacement in Lebanon.

Emily Oliver is Director of BeyondText, an ethics-first creative co-production agency working on GOAL.

Sandy Chaar is a Research Co-ordinator at War Child working on GOAL.

Imad Abou Khalil is a Palestinian-Lebanese Design Thinking practitioner.