Five top tips for doing equitable and respectful health research with Black-led mental health community organisations

The NIHR has been taking important strides to redress historic injustice through funding work which builds strong and respectful partnerships with marginalised communities and through the provision of new funding streams e.g. CLARITY project, ‘Innovation in Involvement’ and partnerships with voluntary, community and faith sector (VCSF) organisations.                                                                                 

Building healthy partnerships between academic institutions and VCSF organisations is increasingly recognised as intrinsic to conducting high-quality and ethical health inequalities research. Recording good practice in building these partnerships is equally as important as reflecting on where improvements are needed. There are consistent calls by healthcare professionals for Black engagement with issues surrounding mental health and wellbeing and increased efforts by health researchers to engage with Black communities.

I draw on data and experiences from a project forming part of a Three NIHR Research Schools Mental Health Programme Career Development Award. Project activities included a scoping review into decolonial, anti-racist, indigenous and emancipatory research methods, eight recorded research conversations and working with Zara Makinta, a community-based researcher, to develop a database of 42 Black-led mental health organisations in the UK. Below, I share five lessons learnt over the past 18 months working with Black-led community organisations focused on mental health and wellbeing in the UK.

1. Understand that Black-led mental health organisations are unique spaces of resistance and support

This project highlights the myriad of ways in which Black-led organisations nurture communities of Black people in the UK. This often involves operating in unorthodox ways, such as, providing personal phone numbers for those in need to get in touch with employees and volunteers when they most need it and community leaders allocating resources according to community need even if this does not align with funder remits. They also provide refuge from racism. All of this work which, takes place outside of statutory health systems (e.g. NHS) and formal ways of working, is undervalued but essential to maintaining and improving the mental health of those of us within Black communities:

“...organisations like ours are always going to be needed. Why? Because there are some people who they just feel more relaxed, they feel better served when there are people who look like them and they don’t have to explain.”

Director of a community organisation - O3P1

This key role that Black-led mental health organisations play shows the need to support their work because… it works.

“...we do a lot of what we call preventative work – but that is not on the targets. And then they just check their records at the end and say, oh there’s been a reduction here, and then not really…sometimes not really know the reduction is because of this.”

Employee at a community organisation - O2P2

There is little understanding of how these organisations function but understanding their mechanisms should not overshadow the fact that they improve the mental health and wellbeing of many people located in Black communities. Community organisations are often used to overcome the mistrust that Black people have for mainstream health care services and racism that they face. However, there is also a need for academics, and mainstream healthcare services that we seek to influence, to value and place more trust in community-held knowledge.

2. Go with a (respectful) offer and a willingness to align with their organisational priorities

In addition to offering financial contributions, the research team should consider other forms of supporting community organisations' needs. This may include writing bids, raising the organisation’s profile in less accessible arenas:

“I tell them it's a Black barbecue when you're coming to my meeting and you can't come with your hand empty, what are you bringing to that meeting because unless you're bringing something and we are leaving something tangible, we're having no meeting because you're not going to use me anymore and my time which is the most precious thing I own.”

Director of a community organisation - O1P1

If we are asking community organisations to contribute to our research aims and objectives, we need to support their endeavours too. Partnerships which encourage mutual support are more conducive to creating strong and equitable partnerships. Once research projects have been designed, bids submitted and funding allocated, it can be challenging to alter research proposals. As such, gaining input from community organisations early in the research design process is essential. This can ensure that you can align research projects with the ethical and social values of the organisations you are working with. Changing the way in which research is conducted, ensuring that every project has benefits for the communities involved, one project at a time for the betterment of communities is a key aspect of creating a better world (Benjamin, 2022).

3. Acknowledge our diversity

There is diversity in the work undertaken by Black-led community organisations, with some providing a trusted link between service users and statutory services and others more focused on supporting the mental health of service users outside of statutory services.

Having a number of organisations working in different areas is advantageous for several reasons. Firstly, it means that Black community members can access the organisation that best fits their mental health and wellbeing needs. Secondly, Black people in the UK are not a monolith.

I had research conversations with people from a range of Black backgrounds, including those serving communities of queer Black men, working with young people, older people and people with disabilities. These discussions brought to light new issues for people experiencing marginalisation due to multiple aspects of their identities:

“there’s still a real struggle with homelessness amongst LGBTQ youth and particularly Black youth.”

Director of a community organisation - O4P1

A range of organisations ensures that the diverse mental health and wellbeing needs of Black communities are catered for. It also means that researchers aiming to work with mental health organisations can choose the organisation that best fits their area of interest. In order to do this, careful consideration is required by researchers before approaching organisations. This brings me to my next point.

4. Do your homework

In research conversations, community organisation leaders and employees highlighted that the ideal is for researchers to develop relationships with Black-led community organisations before descending upon them with our research questions. However, if time constraints prevent this, develop a good understanding of the organisation that you are approaching. Before you meet any senior professional or academic, you would explore their previous work and their profile; do you do the same for Black-led organisations? They are very busy and underpaid, and wasting their time is not only disrespectful but reduces the time they have to deliver services.

Understanding the wider local VCSF research landscape is important too. For academics that can be challenging as the academic literature often does include ongoing or recently completed studies. With the increasing drive to include racially minoritized communities in research, the risk is that they are being repeatedly asked to respond to the same or similar questions or to provide similar data when these are not leading to significant improvements in the communities of study.

“It’s like stop asking us the same damned stupid questions and do something about it, because we keep telling you the same thing.”

Director of a community organisation - O3P1

We need to put the same amount of effort into solving the problems that we unearth through our rigorous research.

Seek out existing resources and good practice. There are now multiple resources available for recruiting and conducting research with Black and other minority ethnic groups. Examples can be found here and here. Who in the area is already doing work? What has worked well? What has not? Projects must not only contribute to the knowledge base, but also provide tangible benefits to the communities involved.

5. Consider the ways in which your project can make a tangible difference to the lives of Black people in the short, medium or long-term

Creative thinking about how to generate benefits for Black communities within and beyond the scope of the project is key. Are there Black individuals, groups or organisations that you can create benefits for?

Despite increasing awareness of mental health disparities between Black and white British populations, there has been little improvement in key areas of Black mental health. People I had research conversations with were keenly aware of this lack of progress. Several academics have also taken issue with the fact that the amount of research being conducted into the challenges that Black people face is not improving our lived experiences at the same rate (Benjamin, 2022; Salami, 2023; Ejegi-Memeh (under review)). This perhaps suggests a need to do things differently rather than more intensively. Black-led emancipatory, participatory research methods and desire-based research have been suggested as possibilities (Akom, 2016; Smith, 2011).

There is a need for research which documents whether things are improving and worsening in terms of Black mental health as well as projects which inform service delivery (Bhugra, 2020). However, alongside this we must also propose and promote research which actions social change and tangible benefits for the object of that research. We need to be more selective about the health and social research that we are proposing and engaging with. There is an element of bravery in reflecting on whether the project you have in mind is really going to benefit Black communities and whether there is an opportunuity to take action, to embody activism, rather than merely document issues.

Examples of short term benefits from my own project included working with peer researchers and agreeing substantial payment for community organisations. Medium term included generating income of over £70,000 for Black VCSF organisation and feeding back on research findings. Longer term, we have been building links between organisations, documenting good practice for other academics to emulate, reflecting on which research methods and foci are worth pursuing going forward, and securing substantial funding for community organisations involved. In April, I will hold an event focused on Black unity and joy. This event aims to bring together 40+ Black-led mental health community organisations. It will provide an opportunity for Black-led organisations to hear about the project findings, to learn from each other, to discover their shared objectives and to form coalitions which will ultimately strengthen their organisations and the work that they undertake for the mental health of Black communities.

Acknowledgements

I would like to thank Zara Makinta, Dr Ros Williams and Rob Berkeley and the community organisations BLKOUT, Adira and SACMHA for comments on drafts for this blog post and guidance during the project. I would also like to thank all those who took part in research conversations.

SEM was funded as part of the Three NIHR Research Schools Mental Health Programme Career Development Award (MH037). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

References

Akom, A.A., 2016. Black emancipatory action research: Integrating a theory of structural racialisation into ethnographic and participatory action research methods. In Race, Ethnography and Education (pp. 113-132).

Benjamin, R., 2022. Viral justice: How we grow the world we want. Princeton University Press.

Bhugra, D., Wijesuriya, R., Gnanapragasam, S. and Persaud, A., 2020. Black and minority mental health in the UK: Challenges and solutions. Forensic science international. Mind and law, 1, p.100036.

Ejegi-Memeh., (under review) Black radical thought and Black health inequalities research praxis. Sociology of Health & Illness

Salami, M., 2020. Sensuous knowledge: A Black feminist approach for everyone. Bloomsbury Publishing.

Smith, S.J., Penados, F. and Gahman, L., 2022. Desire over damage: Epistemological shifts and anticolonial praxis from an indigenous‐led community health project. Sociology of Health & Illness, 44, pp.124-141.