I have spent almost 3 years involved in Global Mental Health research. Global Mental Health research spans countries, cultures, languages and philosophies, however, this field still largely operates through a typical Global Health Model of North-South learning. This model upholds a flawed assumption that Western institutions know best, even if their practices may not be culturally and regionally appropriate or even the best available. I have over this time witnessed a growing discomfort and foundational shift in the field. The more these discussions start to gain traction in Global Mental Health, the more it becomes clear that these are discussions that should be had across all academic research. Cultural competence is not just a Global Mental Health research issue – it’s a general health research issue.
Sarah Derveeuw
This strong pull I have always felt towards understanding cultural relevance and appropriateness in psychological research stems in part from my own mixed background. I am half Belgian, half Congolese, and spent my childhood in Guinea-Bissau, Zimbabwe, India, and Cambodia, before finding a home in the UK to study Psychology, and then later, an MSc in Global Mental Health. I have always had a different nationality, mother tongue, and racial background to those around me, and have therefore grown accustomed to being a minority. Being “othered” in every sense has always meant cultural awareness was my default.
My experience has taught me to recognise that it is the absence of everyday cross-cultural interactions and reminders of individual differences, that lead to complacency and blind spots. In UK academia especially, where diverse representation is severely lacking, we are less likely to turn our gaze inward and recognise when our own practices are exclusionary because we don’t have enough people or systems holding us accountable. When we know that 90% of professional academic staff in the UK identify as white, and Black professors make up fewer than 1% of this group, it seems unlikely that research coming out of UK academic institutions will be able to serve all, equitably (1). More diverse voices need to be heard in research.
This need for a culturally sensitive shift and greater inclusion of diverse voices is not new, but it has become more critical than ever. The COVID-19 pandemic has been a sharp reminder of the entrenched health inequalities faced by underprivileged groups, both in the UK and in low- and middle-income countries. These stark inequalities chip away at the trust in health research structures, reducing minority representation in health research, and further exacerbating health disparities (2). Those who have power and privilege in academia need to recognise they have a role in addressing this.
There are several recommendations for research practices that aim to dismantle power imbalances in Global Mental Health research. Changes need to be made to the way researchers formulate their teams, how they disseminate their research, and how they ensure they uphold these practices beyond their research studies.
Your Team.
Regardless of where you are in your academic or research journey, you can build diverse relationships and connections outside of traditional academia that brings in and includes diversity.
Start by formulating a diverse co-applicant research team
This is not a suggestion for a tokenistic display of diversity by having “at least one Black person” in your list of co-applicants, but rather a push to include people outside of academia to offer their diverse perspectives. Research benefits from diversity across the board, not just in skin colour. A good thing to remember is that academics represent a very small minority of a very privileged, very educated part of society. Involving people from non-academic backgrounds (e.g. charities and community groups) should become common practice as they are (and will always be) endlessly more qualified in understanding your participant group than you as an academic (3, 4, 5).
Recognise the value of having social scientists in your team as well.
Qualitative researchers, anthropologists, ethnographers and sociologists are experts in cultural research and are therefore able to offer advise based on their expertise.
Global Mental Health Example: My team recently submitted a grant application to integrate mental health care in schools in Ghana. Among the Co-I’s were an anthropologist, an NGO programme coordinator, a youth charity director, a member of the Ministry of Health, a demographic surveyor, and youth representatives with lived experience. Fitting in so many Co-Is meant it was a tight budget squeeze and so we had to adjust the original design of our study in our application, but the research would have suffered without this necessary representation from non-academic groups.
Your Design.
There are often legitimate and proven reasons why individuals from a particular ethnic background are under-represented in all areas of research. If your research has lacked diversity in participation, think about why this might be and factor in time and budget for conducting formative work at the beginning of your study. This could include:
Read up
There is already existing literature out there that explains why there is a lack of representation in research, including literature reviews, surveys and stakeholder reports (6,7,8). Read up on this literature and create an annotated linked list of all resources so that you can continue to build a reference list and share this literature with your team and peers.
Qualitative research
Again, this is where social scientists and researchers trained in qualitative methods are an incredible asset. Conduct focus groups and interviews with members of the community, and ensure they know how much you value the opportunity to learn from their experiences. Get their views on your research topic and ask them for priority areas they would like to see you consider in your study. Your aim is to create a reassuring and safe environment for these conversations, where your role is to listen, engage, and validate their voices. Bit by bit, these interactions can help rebuild confidence in a system that has previously abused their trust. -> See below point on building lasting partnerships.
Set up a Community Advisory Group
Ensure your interactions with members of your focus groups are not one-offs and invite them to join your study in the capacity of a Community Advisory Group. Budget for this so that you can make sure they are compensated for this work. Just like any researcher on the team, their knowledge and experience will be incredibly valuable to the running of your study and your interpretation of study results, so it is your responsibility to make a safe space for them in your team. -> See below point about creating a safe environment for your team.
Use culturally validated measures
Take time to evaluate your measures. Do not just rely on classical measures and tools when it is highly likely that they were validated in a population that does not reflect your participant group. Are all the items inclusive? Do they translate across cultures? Do that translate across language? Does the measure use images of people, and if so, are they all white people?
Global Mental Health Example: When validating measures in another language, we follow World Health Organization Guidelines (10), which involves conducting a forward translation into a different language, an expert panel back-translation into English, a pre-testing and cognitive interviewing phase, and then a final writeup of the translated measure and summary of the process. The same level of careful consideration and evaluation, regardless of translation work, should be taken for all measures you include in your study.
Consider a Theory of Change Workshop
This is a specific type of qualitative and collaborative research, usually carried out before you start your study, to involve every possible stakeholder in study planning from the beginning (11, 12). The goal is to map an outcome (e.g. hitting a target number of participants) and then to identify every step that needs to be taken in order to reach the outcome. Different stakeholders will be involved in each step (e.g. clinicians recruiting from clinical sites, social media companies creating advertisements, individuals with lived experience who can provide a participant perspective) so they are able to comment on what is feasible and isn’t based on their knowledge of their area of expertise. This collaborative approach aims to explore every possible perspective that should be considered in the running of your study, reducing the risk of using harmful and ineffective designs that risk breaking the trust of participants or non-academic groups.
Disseminate consciously.
Consider how you can support
Host presentations with the charities and societies with which you collaborated. Ask your Community Advisory Group what they’d like to see and whether they know of any events where you can speak. Create dissemination posters and leaflets to show that you’re not only committed to using these methods to recruit participants but also to showing them what has been done with their data. Write blogs, newsletters and social media posts in a format that is easily accessible to your participants, and host live sessions on your social media so that those who follow you can feel more connected to your research.
Global Mental Health Example: We recently collaborated with a Demographic Surveillance System in Ghana who let us know they broadcast results from regional healthcare research onto national radio, so that participants across the country can hear about how research participation has resulted in new innovations and policies.
Signpost readers of your paper to an FAQ
This is a practice that is becoming common practice to tackle misinformation and misinterpretation of data and study results. It’s especially helpful to do this in behavioural genetics research as, though it is a fast-evolving field, the state of the evidence at this point in time can only provide a limited picture. It is therefore important to explain what your data shows and what your data doesn’t show, and adding a link to a “Frequently Asked Questions” page (such as this one: https://externalizing.org/faqs/) to avoid misinformation. Dr Yasmin Ahmadzadeh also wrote an excellent blog post on how to correctly report on race in research, which is a must-read for any researcher before their next publication (link below).
Acknowledge when you have fallen short
If you are reading this at a point where you have come to the end of your study, are a week away from pre-print and regret that you weren’t able to take these steps from the beginning, there is room to address this in your discussion or the dissemination of your paper. It is always important to pause and reflect on whether you have been authentic and maintained integrity. In Global Mental Health, researchers should continue to confront our own privilege as Western, educated researchers from prestigious academic institutions and recognise when this causes an unethical power imbalance. Similarly, researchers in the UK should continue to recognise their own positions of power, as being part of a (mostly) white and highly educated privileged minority.
The road toward culturally sensitive and inclusive research has no endpoint, and even after integrating all the suggestions above into your research, there will always be more to learn. We can’t change our way of doing research overnight, what we can do is continually learn and collectively strive for better more diverse, and inclusive research. We can become more conscious of different practices, reflect, and learn about the impact of our own biases, privileges, and previous approaches. Simple commitments on how you approach your research can lead to small changes that, collectively, make a massive difference.
Helpful Links:
Global Mental Health MSc Programme: https://www.kcl.ac.uk/study/postgraduate/taught-courses/global-mental-health-msc
Centre for BME Health Toolkits: https://centreforbmehealth.org.uk/resources/toolkits/
The NIHR INCLUDE Project: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-020-04613-7 https://sites.google.com/nihr.ac.uk/include/home
Theory of Change Workshop Guidance: https://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-15-267 https://www.tandfonline.com/doi/full/10.1080/03069885.2016.1217981
Measuring Race, Ethnicity and Ancestry in Research: Time for new Tools: https://blogs.kcl.ac.uk/editlab/2021/01/27/measuring-race-and-ethnicity-in-research-time-for-new-tools/
References:
1. Advance, H. E. Equality in higher education: staff statistical report 2018. Adv. Hematol. 6, 2019–2005 (2018).
2. Treweek, S., Forouhi, N. G., Narayan, K. M. V. & Khunti, K. COVID-19 and ethnicity: who will research results apply to? Lancet 395, 1955–1957 (2020).
3. Alderwick, H., Hutchings, A., Briggs, A. & Mays, N. The impacts of collaboration between local health care and non-health care organizations and factors shaping how they work: a systematic review of reviews. BMC Public Health 21, 753 (2021).
4. Towe, V. L. et al. Cross-Sector Collaborations And Partnerships: Essential Ingredients To Help Shape Health And Well-Being. Health Aff. 35, 1964–1969 (2016).
5. Smith, K. E. et al. Partners in health? A systematic review of the impact of organizational partnerships on public health outcomes in England between 1997 and 2008. J. Public Health 31, 210–221 (2009).
6. Witham, M. D. et al. Developing a roadmap to improve trial delivery for under-served groups: results from a UK multi-stakeholder process. Trials 21, 694 (2020).
7. Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project. https://www.nihr.ac.uk/documents/improving-inclusion-of-under-served-groups-in-clinical-research-guidance-from-include-project/25435. 8. Toolkits. https://centreforbmehealth.org.uk/resources/toolkits/.
9. Razai, M. S., Kankam, H. K. N., Majeed, A., Esmail, A. & Williams, D. R. Mitigating ethnic disparities in covid-19 and beyond. BMJ 372, m4921 (2021).
10. WHO | Process of translation and adaptation of instruments. (2010).
11. De Silva, M. J. et al. Theory of Change: a theory-driven approach to enhance the Medical Research Council’s framework for complex interventions. Trials 15, 267 (2014).
12. Etherington, K. Making research matter: researching for change in the theory and practice of counselling and psychotherapy. British Journal of Guidance & Counselling vol. 44 612–614 (2016).
