Ethnic inequalities in severe psychological distress and care experiences are well-documented. Yet no national policies exist to address them.
Synergi’s ‘Ethnic Inequalities in Severe Mental Illness Study’ aims to inform policy development by addressing gaps in our understanding of the life histories of those who experience profound disadvantages.
Adopting a Participatory Action Research (PAR) approach, this study – the first of its kind – is co-produced with ethnic minority people with lived experience of severe mental illness. PAR tackles inequalities by conducting research with the people who experience them so that those who are usually the objects of study become partners in research and policy decision-making.
A qualitative depth interviewing method, the Biographical Narrative Interpretive Method (BNIM), is embedded in our PAR approach to explore the life histories of ethnic minority people experiencing severe mental distress and those who work with them.
Allowing for the emergence of rich narratives, BNIM creates a space where people can tell their story in their own way, less constrained by the researcher’s views of what is relevant. This approach is particularly significant for people who have experienced oppression and marginalisation; voices that are rarely heard in other than a filtered way. It promotes a linking of subjective experience with the context that shapes that experience, or inner world with the external world.
Working with co-researchers
With over 100 inquiries and over 40 applications for the co-researcher positions, the immense interest this research project has generated highlights how close these issues are to people’s hearts. Originally intending to appoint four casual co-researchers, the number of impressive applicants led to five being appointed on a six-month fixed term basis.
Acknowledging the combination of lived experience expertise and training enabled us to appoint our co-researchers at the level of ‘research associate’. They are four women and one man who identify as South Asian, Black Caribbean and mixed race. Enabling an array of differences at the table, our co-researchers come from diverse social locations but all share a passion for eliminating inequalities and improving mental health services for ethnic minority people, along with a willingness to be open about their own experiences with mental health and an active involvement in the field.
PAR’s explicit political and social justice agenda distinguishes it from other participatory approaches. With roots in Paulo Freire’s liberatory education, the ‘action’ in PAR refers to transforming current practices and power structures. To this end, digital stories demonstrating central themes created from the BNIM interviews will be shown during focus groups with key stakeholders (experts by experience, carers, experts by profession and commissioners) to inform policy development and to improve mental health care for ethnic minority people.
PAR critically engages with questions of power. While we cannot entirely eliminate power differentials in our team, not only those between academic and co-researcher, but also those that exist within any group (e.g. age, gender, class, sexuality, race, religion), PAR urges us to be upfront about them and encourage review, debate, disagreement and open dialogue. We are striving to create this type of atmosphere, which is considered important by our co-researchers, who say:
“I really enjoyed working with the rest of the team and felt very comfortable and able to speak, even though I don’t have as much experience as everyone else. I really appreciate this. I feel like we were able to discuss collaboratively and disagree and debate without arguing.”
“Working in a team with other researchers who have lived experience of mental illness has allowed me to feel comfortable with opening up about my own unusual experiences in a way that I have not done before within a professional setting.”
PAR promotes a mutual learning process where co-researchers and academics learn from one another. But relationship (and trust-building) are essential. Patricia Maguire, a pioneer in bridging feminist and participatory action research, has emphasized that PAR requires a commitment to “be-in-relationship”. As she points out, this takes time, patience, acceptance, a willingness to be vulnerable, but that it can also be joyful and mutually enhancing.
We established group cohesiveness very early on in our work together. This may be partly attributable to our attempts to create an informal, non-hierarchical space, but is also down to the courage of co-researchers in creating what bell hooks has called a “space of radical openness”. Co-researchers’ comments clearly reflect how important ‘being in relationship’ is to them:
After the training, one co-researcher wrote in an email: “Missing you all already.”
“I noted my reactions to seeing each group member again; I felt excited and joyous to be back in training with the group. The ‘space’ feels safe, comforting and contained.”
“Thank you for our meal list night. It was wonderful and very emotional. What an incredible team and I’m so grateful for this experience…”
“As I am writing this reflection the next morning, I do feel slightly sad not to be in room 2.04, but I guess I should just appreciate the moment and be glad that such a wonderful selection of people were picked to be involved with the project.”
A five day intensive training programme included research principles, PAR and BNIM, developed by Tom Wengraf who consulted with us to tailor the training to our participants.
Consistent with PAR, we preserved plenty of time for dialogue and sharing personal experiences to illustrate theory and research. Using Freire’s ‘problem-posing’ approach allowed a naturalistic emergence of issues to come from the co-researchers’ lived experiences, enhancing the training. This enabled expression of insights that those of us without lived experience could not possess.
“I appreciated their training delivery style, which was very much non-hierarchical and very inclusive of the entire group. I felt that they were truly interested in hearing personal experiences and how these could contribute to the research project.”
Lessons learned thus far
Compassion and sensitivity to what is going on in the room, in interactions and its connection to the personal and political histories of team members, seemed crucial to the success of our team building. The five day training experience, and our work thus far, has reinforced the importance of ensuring space and time for:
- building rapport through ice breakers
- sharing personal aspects of ourselves
- questioning, open dialogue, reflexivity
- having fun
- bonding over meals
- process/acknowledging group dynamics
- admitting ‘I don’t know’
- non-hierarchical process
The last two days of training, which focussed on BNIM, were opened up to three academic colleagues. In retrospect, we would not do this again as the co-researchers found this unsettling, which I think no further amount of preparation could have alleviated:
“I had forgotten some new people would be joining us. As soon as I walked through the door, I was aware I could feel a shift, [a] change in the group dynamics. I felt different the previous days. I was now uncomfortable, extremely nervous, and anxious.”
“I am very aware that I experienced a personal change of group dynamics and almost felt protective of the original four group members. The impact of the additional members was compounded because I experienced quite an intense three days in the first week with the original group and I was aware of potential ‘ingroup’ and ‘outgroup’ feelings.”
PAR aims to develop critical consciousness and self-reflexivity through repeated cycles of reflection, action and dialogue. Freire referred to this process as ‘praxis’; an important distinguishing feature of PAR that promotes non-linear integration of theory, research and practice/action.
Praxis has the potential for social and personal transformation involving changing how one sees oneself in relation to the world. I think we are already beginning to see hints of transformation as reflected by some of the co-researchers’ feedback:
“I never thought I could do the clinical doctorate, now after the PAR training I’m going to apply.”
“The day earlier I was questioning if they picked the right person for the job and today has given my so much confidence, and some of the things I do and how are natural to me. Often, I don’t even see these things as [a] skill.”
“Today has been interesting, confidence building, learning and fun, fun, fun. I’m already sad that we only have six months together on this project. I’m so excited to see what the rest of our journeys will bring.”
I, too, am excited to see what our journey together will bring.
Dr Maria Haarmans is Synergi’s research associate and PAR project lead, based at the University of Manchester.
Active recruitment for research participants for the qualitative life story interviews is underway. If you are based in Manchester see the latest advert here.