Health and social care research is essential for informing decisions by expanding knowledge in various areas before implementing practices (National Institute for Health Research, n.d.). However, diversity is a crucial factor that can pose challenges for both qualitative and quantitative researchers in the social sciences.
Studies show that research often overlooks representing the voices of ethnic minorities, despite the acknowledgment that these populations face greater health disparities and poorer treatment outcomes (Smart et al., 2017). This absence of representation can lead to treatments that may not be applicable or beneficial for ethnic minority groups, thereby perpetuating health inequalities.
It is vital to ensure that health and social care research includes participation from underrepresented groups. Nevertheless, barriers such as lack of understanding and resources hinder research engagement among minority communities (Brown et al., 2014). Hence, gaining a comprehensive understanding of research experiences, interests, and priorities among minority groups is crucial, as demonstrated by the study conducted by Ekezie and colleagues (2023).
As research plays a key role in the development of healthcare guidelines, it is important that a diverse range of voices are represented. If this doesn’t happen, there is a risk that the treatments developed will not be generalisable or helpful.
Methods
The REPRESENT study focuses on exploring research priorities related to health and social care among ethnic minority populations in the UK. This article highlights qualitative findings from the project, collected from minority communities, healthcare providers, and researchers in the East Midlands between May and September 2022.
The study involved ethnic minority members from the Centre for Ethnic Health Research, alongside Patient and Public Involvement and Engagement (PPIE) groups. The research data was collected through focus groups and interviews, and thematic analysis was employed for analysis.
Results
A total of 52 individuals participated in focus groups and interviews, representing diverse minority backgrounds and healthcare professionals. The analysis produced three main themes:
Theme 1: Health information and healthcare seeking actions
- Participants often sought healthcare information online, but faced challenges related to language skills and reliability of information. Community organizations were seen as a good alternative for health information.
- Barriers such as lack of cultural understanding and difficult access to appointments were highlighted, along with recommendations for improvement in healthcare communication and access to bilingual support.
Theme 2: Medical, health, and social care service experiences
- Poor access to services and experiences of discrimination were significant barriers highlighted by participants, leading to recommendations for increasing early intervention and awareness of mental health among minority communities.
Theme 3: Health research
- Low participation in research among communities was noted, with incentives suggested as a way to increase motivation. Research interests and priorities included topics such as cancer, diabetes, mental health, and social care.
Participants from minority groups highlighted a range of barriers to engaging with research, including the perception of no direct benefit to themselves or their communities.
Conclusions
The study findings underscore the impact of cultural discrimination and lack of understanding in perpetuating the underrepresentation of ethnic minority voices in health and social care research. Addressing barriers and improving access to services are crucial steps towards reducing disparities and building trust within these communities.
Ethnic minorities may be more likely to turn to their communities for healthcare advice rather than official healthcare providers. Increasing community confidence in health and social care services is vital for change.
Implications for practice
Practice
- Implement culturally sensitive health and social care services with trained HCPs to understand cultural concepts of distress among minority ethnic groups.
- Enhance relationships between services and communities to improve trust and communication, ensuring access to private one-to-one support.
Research
- Consider potential barriers to research engagement among minoritized groups and implement strategies to overcome them, engage communities from the outset, and prioritize research topics important to minority communities.
Policy and funding
- Direct more focus and funding towards early intervention and support for health-seeking behaviors among minority communities, including the development of community champions and linguistic support.
When designing research that involves minoritised groups, it is important to proactively implement methods for overcoming potential barriers to research engagement.
Strengths and limitations
Strengths
- The study demonstrates appropriate use of qualitative methods and collaboration with PPIE contributors, enhancing the credibility and relevance of the findings.
- The detailed information on recommended research areas provided in supplementary materials is valuable for researchers and policymakers in understanding minority populations’ needs.
Limitations
- Opportunities for more private one-on-one interviews could have provided a more comfortable setting for participants to share personal experiences.
- The sample’s limited scope to specific ethnic minority communities in the East Midlands hinders the generalizability of the findings.
- Lack of reflexivity statements and potential bias from previous interactions with participants impact the study’s transparency and credibility.
There are several strengths to this study, including their use of Patient and Public Involvement and Engagement (PPIE); but the authors also fail to provide a reflexivity statement that reflects how their identities, experiences, values and beliefs may have influenced the research.
Statement of interests
None.
Links
Primary paper
Ekezie, W., Cassambai, S., Czyznikowska, B., Curtis, F., O’Mahoney, L. L., Willis, A., … & Farooqi, A. (2024). Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study). Health Expectations, 27(1), e13944.
Other references
Bhopal, R. (2004). Glossary of terms relating to ethnicity and race: for reflection and debate. Journal of Epidemiology and Community Health, 58(6), 441–445.
Brown, G., Marshall, M., Bower, P., Woodham, A., & Waheed, W. (2014). Barriers to recruiting ethnic minorities to mental health research: a systematic review. International Journal of Methods in Psychiatric Research, 23(1), 36-48.
National Institute for Health Research. (n.d.). What is health and care research? – Be Part of Research. Retrieved February 13, 2024, from https://bepartofresearch.nihr.ac.uk/about/What-is-health-and-care-research/
Pilav, S., De Backer, K., Easter, A., Silverio, S. A., Sundaresh, S., Roberts, S. & Howard, L. M. (2022). A qualitative study of minority ethnic women’s experiences of access to and engagement with perinatal mental health care. BMC Pregnancy and Childbirth, 22(1).
Smart, A., & Harrison, E. (2017). The under-representation of minority ethnic groups in UK medical research. Ethnicity & Health, 22(1), 65-82.
