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 Partic...

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Publicado en:Age & Ageing Vol. 54; no. 10; pp. 1 - 11
Autores principales: Ramadhan, Mouhammed, Schrag, Anette, Tufail, Mahil, Stott, Joshua
Formato: Artículo
Publicado: Oxford University Press / USA Oct2025
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Participation of ethnic minorities in Parkinson's research: challenges and needs. A qualitative study.
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        au:
          Ramadhan, Mouhammed
          Schrag, Anette
          Tufail, Mahil
          Stott, Joshua
        affil:
          Department of Clinical and Movement Neurosciences, University College London, London, WC1E 6BT, UK
          Department of Clinical, Educational and Health Psychology, University College London, London, UK
      su:
        United Kingdom
        Ethnic groups
        Self-evaluation
        Cultural awareness
        Qualitative research
        Clinical trials
        Human research subjects
        Interviewing
        Medical research
        Trust
        Arabs
        Minorities
        Psychosocial factors
        Patient participation
        Cultural pluralism
        Patient selection
        Diversity & inclusion policies
        Parkinson's disease
        Descriptive statistics
        Judgment sampling
        Thematic analysis
        South Asians
        Black British
        Research methodology
        Comparative studies
        Data analysis software
        Middle Easterners
      sug:
        subj:
          Ethnic groups
          Self-evaluation
          Cultural awareness
          Qualitative research
          Clinical trials
          Human research subjects
          Interviewing
          Medical research
          Trust
          Arabs
          Minorities
          Psychosocial factors
          Patient participation
          Cultural pluralism
          United Kingdom
          Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology)
          Patient selection
          Diversity & inclusion policies
          Parkinson's disease
          Descriptive statistics
          Judgment sampling
          Thematic analysis
          South Asians
          Black British
          Research methodology
          Comparative studies
          Data analysis software
          Middle Easterners
      keyword:
        barriers
        ethnic minority
        improve
        minority groups
        older people
        parkinson disease
        participation
        qualitative research
        barriers
        ethnic minority
        improve
        minority groups
        older people
        parkinson disease
        participation
        qualitative research
      ab: 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.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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