PITCH: Primary Care mental health research - Where’s the diversity? Reflections on South Asian and Central and Eastern European Public and Patient Involvement (PPI) initiatives

Conference:

SAPC ASM 2018 - London

Talk Code:

5C.3b

Presenter:

Aaron Poppleton

Twitter:

@AaronPoppleton

Co-authors:

Nadeem Gire(1,2), Paula Brindas(3), Iulian Ionescu(4), Naeem Mohamed(2), Nusrat Husain(2).

Author institutions:

1. University of Central Lancashire, School of Health & Wellbeing, 2. Global Mental Health and Cultural Psychiatry Research Group, University of Manchester, 3. Isle of Wight NHS trust, 4. Greater Manchester Mental Health NHS Foundation Trust.

Problem

Office for National Statistics 2011 census figures describe the population of England and Wales as: Asian/Asian British (7.5%), non-British/non-Irish White (4.4%) and Black/African/Caribbean/Black British (3.3%). Ethnic minority populations are underrepresented in healthcare research. Recruitment and participation in community mental health research is complicated by significant mental health associated stigma within many ethnic minority communities (EMCs). Incidence of affective disorders, alcohol misuse, self-harm, and suicide are higher within many ethnic minority groups. Limited research participation creates significant challenges in understanding the underlying mental health needs of EMCs, in addition to cultural adaptation of interventions and healthcare services. Co-production increases level of service user, carer and public stakeholder involvement within research. Doing so empowers individuals and groups through recognition and respect of diversity, rights and autonomy. Empowerment is crucially important in mental health care and research, where the legacy of paternalism is often assumed by individuals. Such perceptions are however often not held towards primary care. Primary care holds a key position in identifying the mental health needs facing local ethnic minority populations, in addition to the common barriers and facilitators to care.

Approach

The Global Mental Health research group, University of Manchester, has developed ethnic minority public and patient involvement PPI groups in line with NIHR INVOLVE literature on widening PPI participation and with support from the NIHR Research Design Service (RDS). Initiation was achieved through partnerships with primary care practices and discussion with community stakeholders (religious leaders (Priests/Imams), cultural centre volunteers, UK based CEE healthcare workers) within the British South Asian (BSA) and Central/Eastern European (CEE) communities in northwest England. Outputs have contributed to current and intended nationally funded studies including: ROSHNI-2, Y-CMAP, TechCare, and suicide prevention/awareness strategies.

Findings

Key themes identified in effective group design and promotion, include:

1. Engagement and support of community leaders

2. Promotion via accessible media and personal invitation

3. Setting within a known community focus point

4. Communication sensitive to language needs

5. Sensitivity towards cultural barriers

6. Continuity: encouraging participation and valuing contributions.

Consequences

Primary care holds a key position in identifying mental health needs, barriers and facilitators to care for EMCs. Development of EMC oriented PPIs increases cultural relevance of research studies and their findings. Resultant improvements in the cultural acceptability of research increases likelihood of successful trial design, implementation, and output in terms of acceptable novel community mental health interventions. Participation throughout the research process can empower and envision individuals from EMCs through awareness of contributions’ impact. Support of practice based PPI groups creates community health advocates, helping to overcome mental health stigma. Our research group intends to expand our community EMC PPI work to date with the intention of building further community and practice involvement in this underserved research field.

Submitted by:

Aaron Poppleton

Funding acknowledgement:

We declare no competing interests. AP and NG gratefully acknowledge the support and funding of the National Institute of Health Research Collaboration for Leadership in Applied Health Research and Care North West Coast. AP is also funded by the NHS CCG for East Lancashire.