Facilitating lay involvement of people from underserved groups in Mental Health research
World Mental Health day on 10th October 2021 follows some improvement and optimism since the worst of the coronavirus pandemic, possibly the greatest global challenge since World War II. The theme of Mental Health in an Unequal World is apt, given the well-publicised exacerbations of pre-existing health inequality that the pandemic brought. Members of the Society for Academic Primary Care (SAPC) mental health Special Interest Group (SIG) came together to present and discuss research focusing mental health inequalities.
Ethnic minority groups within mental health research
People from ethnic minorities are considered under-represented within mental health research. This lack of representation means findings are often less generalisable to them. Both Dr Hassan Awan and Dr Aaron Poppleton are undertaking a Wellcome Trust funded PhD in Primary Care at Keele University exploring ways to improve the mental health of ethnic minority groups. They share advice and lessons learnt from their research working with members of the British South Asian and UK Central and Eastern European communities.
British South Asians
South Asians represent the largest minority ethnic group in the UK; 7.5% of the total population. Research suggests that this population are more likely to experience long-term physical health conditions such as diabetes and heart disease. People from ethnic minorities are less likely to recognise mental illness, seek help and are under-supported by services. Dr Hassan Awan’s research asks, How do males of South Asian origin with long-term physical conditions understand, experience and seek help for emotional distress?’ A key part of the research has been to establish an ethnically appropriate patient advisory group representative of this community, six South Asian men whose input shaped and enhanced the work. These experiences shaped a wider discussion at the SIG meeting on how to support lay involvement of people from underserved groups in mental health research. Here are some key points:
- Relevance. The research should be relevant to the different communities served. Researching focussing on a specific underserved group is one way of ensuring their voices are heard, however research in general should try to be inclusive to different communities.
- Collaboration. To ensure that the research is relevant, involve a patient advisory group that includes underserved community members. This will ensure that research about people, is for people.
- Community outreach. To involve different communities, researchers should reach out to marginalised communities. In our research, we contacted and met with different community, cultural and faith groups relevant to South Asians. This developed a relationship of trust and supported their engagement with the research, both as members of a patient advisory group and when recruiting participants.
- Sensitivity. Be sensitive to underserved groups. They may be viewed as hard-to-reach because their needs have been thrown out-of-reach. When interviewing South Asians, there was often an undertone of mistrust based on geopolitical history and colonialism.
- Diversify. As a researcher you can support diversity in the research environment by encouraging people from underserved backgrounds to consider research as a career. As a member of the South Asian community, I am linked in with relevant networks and groups; this helped ‘open the door’ to conversations about my PhD and the role of research.
- Humility. The patient advisory group offered excellent advice and support. This included shaping the research question, recruitment from particular areas, how best to utilise local community and faith centres and advising on times to speak at religious and cultural events in order to capture the largest audience. Listening to and acting upon their expertise was vital. For example when listening to the patient advisory group discuss proposed themes, they mentioned gaps from the thematic analysis that they would have expected which were not found but are present in South Asian culture. As a South Asian I was aware of the topics they mentioned, however I had not linked them to the research. I realised that in wearing my researcher hat I had left behind my South Asian hat.
- Community dissemination. Engage with underserved communities when you share your findings. In my research, interested participants are being kept informed of the results. As well as academic avenues for dissemination, a community dissemination event and animated video are intended to ensure that the results of the research reach the people and communities researched.
The UK Central and Eastern European Community
There are over 2 million people from Central and Eastern Europe living within the UK. While comparatively high rates of anxiety, depression and alcohol misuse have been reported, they are significantly underrepresented in primary care research and policy. Dr Aaron Poppleton is exploring how to Culturally Adapt Primary Care delivered Mental Healthcare for the UK Central and Eastern European Community (CLARENCE).
He has discussed motivations, supporting factors and challenges to taking part in mental health related primary care research with community members, leaders and organisations through a series of engagement events. Key point raised, in addition a number of ‘lessons learnt’ from organising the events, have shaped the following list of recommendations:
- Who are you reaching? Groups are rarely uniform. Smaller subpopulations, including individuals with less commonly spoken languages, distinct cultural practices or who are marginalised/vulnerable may be deemed ‘harder to reach’. In the context of the Central and Eastern European community this may include the Roma, trafficked individuals, or non-Polish/Romanian groups.
- How are you reaching out? Community organisations, including churches, cultural centres and Saturday schools can provide support in reaching out to community members. Contact with socially disconnected individuals, including those with limited English language ability can be more challenging. Using snowballing, simplified English, video clips, and where appropriate translated materials can increase awareness.
- What have you done to build trust? Central and Eastern Europeans may have preconceived perceptions of government associated organisations and individuals within the UK, including healthcare workers and researchers. This can stem from negative media coverage of the community, prior experiences of research studies, lack of impact from previous initiatives and perceived risk of taking part. Community leader or spokesperson endorsement, for example by a priest, co-national health worker, or language/Saturday school teacher can promote trust.
- Is your research meaningful? One finding from the engagement events was that some Central and Eastern Europeans, particularly men, did not see the need to discuss health needs and attitudes in depth. This in turn reduced their likelihood of taking part in research. Clinicians and community members often had different views on what was the greatest healthcare needs faced by the community are. Identifying such sticking points early on and avoiding ‘medical jargon’ is crucial to ensure both relevance and buy-in amongst community members.
- Is it sensitive? Both engagement and event participants described mental health, alcohol/substance misuse and sexuality as highly personal and potentially stigmatising topics. Topical socio-political events can also shape willingness to engage. Brexit had increased feelings of anxiety, insecurity and discrimination for many individuals from Central and Eastern Europe. Discussion of such topics with community members requires sensitive and careful introduction. Careful consideration of how research activities, topics and dissemination of findings may be both perceived by and affect individuals and the wider community is key to ensuring ongoing positive benefits.
- Is it feasible and beneficial? Work schedules, family and child-care commitments and travel to see family during holiday periods limit the time that many Central and Eastern Europeans have to participate in research. Flexibility to work around these factors is required, alongside a willingness to be flexible both in communication and research methods. Having an incentive to participate, such as a retail voucher or providing childcare during the research interview/focus group, recognises and helps to compensate for the time and effort taken.