Participation of ethnic minorities in Parkinson's research: challenges and needs. A qualitative study.

OBJECTIVE

To explore barriers to participation in Parkinson's disease (PD) research trials amongst ethnic minority (EM) individuals in the UK and to identify potential strategies to improve inclusivity.

DESIGN

A qualitative study using semi-structured interviews and thematic analysis.

SETTING

Participants were recruited primarily through community outreach in the UK.

PARTICIPANTS

Twenty-one individuals diagnosed with PD, self-identifying as belonging to EM groups, participated in the study. The sample included individuals from South Asian, Black African and Middle Eastern backgrounds.

RESULTS

Five themes were identified: (i) Lack of Awareness of Research Opportunities; (ii) Mistrust and Misconceptions about Research, where fears and misunderstandings about research processes contributed to hesitancy; (iii) Understanding the importance and scope of research, some participants viewed research only as a means to find a cure, while others emphasised the need for studies on non-motor symptoms; (iv) Practical and Parkinson's-related barriers, including fatigue, travel difficulties, financial constraints and language barriers; and (v) Facilitators to Participation many preferring flexible and remote participation options.

CONCLUSIONS

This study found addressing barriers to participation requires tailored engagement strategies, transparent communication, diverse representation in research teams and practical support measures. Emphasising the importance of research and its potential to improve treatments and outcomes is essential to improving inclusivity and accessibility in PD research.