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Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.

ABSTRACT: There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders.Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people.Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added "hassle" factor in engaging with more diverse populations than many have hitherto been accustomed to.

SUBMITTER: Sheikh A

PROVIDER: S-EPMC2752116 | biostudies-literature | 2009 Oct

REPOSITORIES: biostudies-literature

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Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.

Sheikh Aziz A Halani Laila L Bhopal Raj R Netuveli Gopalakrishnan G Partridge Martyn R MR Car Josip J Griffiths Chris C Levy Mark M

PLoS medicine 20091013 10

<h4>Background</h4>There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated appr ...[more]

PMID: 19823568

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Project description:Objectives To explore the perspectives of ethnic minority community leaders in relation to: the impact of the COVID-19 pandemic on their communities; and their community’s perception, understanding and adherence to government guidelines on COVID-19 public health measures. Design A phenomenological approach was adopted using qualitative semistructured interviews. Settings Community organisations and places of worships in the West Midlands, England. Participants Community leaders recruited through organisations representing ethnic minority communities and religious places of worship. Results A total of 19 participants took part. Participants alluded to historical and structural differences for the observed disparities in COVID-19 morbidity and mortality. Many struggled with lockdown measures which impeded cultural and religious gatherings that were deemed to be integral to the community. Cultural and social practices led to many suffering on their own as discussion of mental health was still deemed a taboo within many communities. Many expressed their community’s reluctance to report symptoms for the fear of financial and physical health implications. They reported increase in hate crime which was deemed to be exacerbated due to perceived insensitive messaging from authority officials and historical racism in the society. Access and adherence to government guidelines was an issue for many due to language and digital barriers. Reinforcement from trusted community and religious leaders encouraged adherence. Points of support such as food banks were vital in ensuring essential supplies during the pandemic. Many could not afford or have access to masks and sanitisers. Conclusion The study highlights the perceived impact of the COVID-19 pandemic on ethnic minority communities. Government agencies and public health agencies need to integrate with the community, and community leaders can enable dissemination of key messages to deliver targeted yet sensitive public health advice which incorporates cultural and religious practices. Addressing the root causes of disparities is imperative to mitigate current and future pandemics.

Project description:Despite the global threat of antimicrobial resistance (AMR), evidence on the use and quality of medicines at community level is limited, particularly in impoverished, rural areas where prevalence of (bacterial) infections is high. To better understand the processes that drive vulnerability to AMR' effects, this study aimed to assess social factors underpinning access to-and use of-medical products and healthcare, among people from the Raglai ethnic minority in Ninh Thuan Province, Vietnam. We conducted ethnographic research in eight villages in 2018-2019, using interviewing and participant observation methods for data collection. Different types of informants (including community members and healthcare providers) were selected using purposive sampling strategies and analysis was retroductive. Our findings show that, despite the existence of a government-funded health insurance scheme, Raglai people's flexible therapeutic itineraries did not systematically start with formal healthcare. Different types of care (private/informal, public, shamanic) were combined in parallel or in alternation, determined by distance to the provider, cost, workload, perceived diagnostic capacity, perceived severity and aetiology of the illness, and trust in the provider. Available medicines were often tablets dispensed in plastic bags containing labelled tablets, unlabelled tablets (in bulk) or tablets ground to powder. Treatment was often considered effective when it relieved symptoms, which led to abandonment of the treatment course. When symptoms did not speedily abate, the illness aetiology would be reinterpreted, and "stronger" medicines would be sought. The precarious socio-economic status of some Raglai drove them in cycles of severe poverty when additional unforeseen factors such as illness, animal disease or loss of crops arose, hampering access to (in)formal healthcare providers and/or appropriate diagnosis and treatment. We conclude that Raglai communities are structurally unable to buffer themselves against the threat and consequences of AMR. Despite this vulnerability, they are among the least targeted by efforts to optimize antibiotic use, which are concentrated in secondary and tertiary healthcare facilities targeted at urban populations.

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Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.

Publications

Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.

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