Ramadhan, M;
Schrag, A;
Tufail, M;
Stott, J;
(2025)
Participation of ethnic minorities in Parkinson’s research: challenges and needs. A qualitative study.
Age and Ageing
, 54
(10)
, Article afaf296. 10.1093/ageing/afaf296.
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Abstract
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.
| Type: | Article |
|---|---|
| Title: | Participation of ethnic minorities in Parkinson’s research: challenges and needs. A qualitative study |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1093/ageing/afaf296 |
| Publisher version: | https://doi.org/10.1093/ageing/afaf296 |
| Language: | English |
| Additional information: | © The Author(s) 2025. Published by Oxford University Press on behalf of the British Geriatrics Society. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | Parkinson’s disease, barriers, ethnic minority, improve, older people, participation, qualitative research, Humans, Parkinson Disease, Qualitative Research, Male, Female, Aged, Middle Aged, Patient Selection, Minority Groups, United Kingdom, Interviews as Topic, Health Knowledge, Attitudes, Practice, Aged, 80 and over, Needs Assessment, Trust, Communication Barriers, Biomedical Research, Ethnicity |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10216785 |
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