Engaging Citizen Social Scientists in mental health research: Listening to communities during a Pandemic

During March - June 2021, we* conducted a Mental Health Listening Exercise on behalf of the West Midlands Combined Authority (WMCA). This work was intended to inform the WMCA’s upcoming Mental Health Commission: ensuring that people and people’s voices were at the heart of, and the foundation for, the Commission and its recommendations. The West Midlands is one of the most diverse regions in the UK and home to people from numerous faiths and cultures and it was important to ensure that all these voices were heard.

It was timed to capture community feedback on how individuals’ mental health had been impacted by Covid-19 pandemic – which in itself presented challenges in how to elicit those community voices. Researching collaboratively with 5 Citizen Social Science (CSS) researchers, who each carried out their own small-scale projects within their peer communities, broadened the scope of the study and allowed us to extend our reach and listen to as many diverse voices as possible.

For some there remains stigma around the topic of mental health, and cultural differences can influence how mental ill-health is perceived and experienced – potentially restricting the quality and depth of feedback for studies of this kind. As we began the Listening Exercise, England was nearing the end of its third national lockdown (January to March 2021) and moving into a subsequent phased exit from lockdowns thereafter. With ‘work from home’ guidance remaining in place until July 2021, limiting social engagement, researchers faced practical and ethical challenges in conducting research on the sensitive topic of mental health.

Ordinarily, qualitative researchers rely on face-to-face interaction with research participants to establish trust and develop deeper inter-personal communication.  We were able to overcome some of challenges we faced in undertaking the research during a time of pandemic by collaborating with CSS researchers who had an existing rapport, and could engage their peers to talk about the sensitive issues that can impact upon mental wellbeing. We were able to listen to the concerns about mental health from people who are often underrepresented: young people going through the asylum process, undocumented migrants and those experiencing housing insecurity. This was important data that supplemented our listening with: the Voluntary, Community, Faith and Social Enterprise (VCFSE) sector; representatives from the South Asian communities; and a cohort of public sector workers.

One of the main takeaways from the project was that participants really wanted their voices heard. As one participant commented, taking part in one of our focus group discussions made him realise he was not alone in the challenges he had faced in responding to the needs of communities during the pandemic.

Citizen Social Science research is a participatory method where people with lived experience and contextual understandings of their communities engage their peers in the research process. As CSS researchers are drawn from the communities that they engage with in the research, they can help overcome the various social, cultural and language barriers that can prevent participation in research projects.

Researchers across the project focused on three main questions:

• How have the mental health issues in your community/area of expertise changed or emerged during the pandemic?
• What activities/ideas have emerged to help with supporting people’s mental health?
• What do you think are the priorities and key learning from recent experience, and what can/should WMCA support to take forward through the Mental Health Commission?

Findings from the Listening Exercise suggested that the most common reasons for deteriorating mental health during the pandemic were loneliness and isolation, increased anxiety, increased family and relational tensions and grief and loss. Additionally, the listening exercise provided valuable insights into the groups most affected by worsening mental health, as well as the factors that undermine and support people to feel mentally well.

As one of the participants said: “Mental health challenges can emanate from individual and multiple sources and as such the support needed by individuals will vary... The commission needs to recognise the complexity of what they are dealing with…”

The approach of using Citizen Social Science researchers has ensured that that complexity of issues – its routes and manifestations – will be better understood by WMCA’s Mental Health Commission when it starts its work later in the year.