Dataset Information

Recruiting ethnic minority participants to a clinical trial: a qualitative study.

ABSTRACT:

Objectives

To compare the motives and experiences of different ethnic groups participating in a randomised double blind placebo-controlled trial of montelukast in preschool wheeze, and to assess parents' or guardians' understanding of trial procedures and their implications, including the collection of genetic material.

Design

Qualitative interviews with parents or guardians.

Setting

Interviews occurred in the homes of London children recruited to a national multicentre clinical trial following primary and secondary care attendance with wheeze.

Participants

42 parents (20 of Bangladeshi origin, 10 white UK, 12 other ethnicities) of preschool children enrolled in a clinical trial.

Results

Bangladeshi families were relatively reluctant to participate in the qualitative study, despite strong engagement with the parent study. Anxiety related to wheezing was a common primary motive for trial enrolment. Parents viewed the trial as a route to improved treatment. Verbal delivery of trial information appeared more effective than study literature, especially for Bangladeshi families, with low parental literacy and high levels of trust in medical professionals potential contributors to this effect. All ethnic groups expressed a low understanding and/or retention of essential study concepts such as randomisation and genetic testing.

Conclusions

Bangladeshi families are particularly motivated to participate in clinical trials despite variable comprehension of study concepts. This motivation is more strongly contingent on strong researcher-subject rapport than on the quality of study literature. Trial teams seeking to recruit from South Asian populations should emphasise face-to-face verbal explanation of trial concepts and procedures and consider modified trial literature.

SUBMITTER: Macneill V

PROVIDER: S-EPMC3641476 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recruiting ethnic minority participants to a clinical trial: a qualitative study.

Macneill Virginia V Nwokoro Chinedu C Griffiths Chris C Grigg Jonathan J Seale Clive C

BMJ open 20130408 4

<h4>Objectives</h4>To compare the motives and experiences of different ethnic groups participating in a randomised double blind placebo-controlled trial of montelukast in preschool wheeze, and to assess parents' or guardians' understanding of trial procedures and their implications, including the collection of genetic material.<h4>Design</h4>Qualitative interviews with parents or guardians.<h4>Setting</h4>Interviews occurred in the homes of London children recruited to a national multicentre cli ...[more]

PMID: 23572193

Similar Datasets

Project description:ObjectivesTo improve clinical study developments for elderly populations, we aim to understand how they transfer their experiences into validated, standardised self-completed study measurement instruments. We analysed how women (mean 78±8 years of age) participating in a randomised controlled trial (RCT) cognised study instruments used to evaluate outcomes of the intervention.SettingThe interview study was nested in an RCT on chronic neck pain using common measurement instruments situated in an elderly community in Berlin, Germany, which comprised of units for independent and assisted-living options.ParticipantsThe sample (n=20 women) was selected from the RCT sample (n=117, 95% women, mean age 76 (SD±8) years). Interview participants were selected using a purposive sampling list based on the RCT outcomes.OutcomesWe asked participants about their experiences completing the RCT questionnaires. Interviews were analysed thematically, then compared with the questionnaires.ResultsInterviewees had difficulties in translating complex experiences into a single value on a scale and understanding the relationship of the questionnaires to study aims. Interviewees considered important for the trial that their actual experiences were understood by trial organisers. This information was not transferrable by means of the questionnaires. To rectify these difficulties, interviewees used strategies such as adding notes, adding response categories or skipping an item.ConclusionsElderly interview participants understood the importance of completing questionnaires for trial success. This led to strategies of completing the questionnaires that resulted in 'missing' or ambiguous data. To improve data collection in elderly populations, educational materials addressing the differential logics should be developed and tested. Pilot testing validated instruments using cognitive interviews may be particularly important in such populations. Finally, when the target of an intervention is a subjective experience, it seems important to create a method by which participants can convey their personal experiences. These could be nested qualitative studies.Trial registration numberISRCTN77108101807.

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:BackgroundCervical cancer screening (CCS) and human papillomavirus vaccination (HPVV) are effective measures against cervical cancer (CC). Attendance in HPVV and CCS provides the greatest protection, while combined non-attendance in HPVV and CCS provides little to no protection. It is hence concerning that some large ethnic minority groups show considerably lower HPVV and CCS attendance than other women-especially women from Middle-Eastern and North African (MENA) countries and Pakistan. Little is, however, known about the reasons for this low combined attendance pattern n.AimTo explore perceptions of and barriers to HPVV and CCS, among MENA and Pakistani women in Denmark.MethodFocus group interviews were conducted. Data was transcribed verbatim, and analysed using systematic text condensation.FindingsSeventeen long-term resident women originating from six major MENA countries and Pakistan were included. Mean age was 36 years. We found that these women, across different age groups and descent, had sparse knowledge and understanding about CC, and their perceived relevance of disease prevention was low. Compared to HPVV, their barriers to CCS were more fixed and often linked to socio-cultural factors such as taboos related to female genitals and sexuality. Moreover, they presented unmet expectations and signs of mistrust in the healthcare system. However, at the end of the interviews, participants became more attentive toward CC prevention, particularly toward HPVV.ConclusionElements of insufficient knowledge and understanding of CC and its prevention were found among a group of MENA and Pakistani women. Their socio-cultural background further represents a barrier particularly towards CCS. Additionally, negative experiences and unmet expectations lessen their trust in the healthcare system. All of which underlines the need for new tailored CC preventive strategies for this group. Based on our findings we suggest that future studies develop and evaluate interventions aiming to improve HPVV and CCS, including user-involvement.

Project description:BackgroundThere 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.Methods and findingsInterviews 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.ConclusionsMost 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.

Dataset Information

Recruiting ethnic minority participants to a clinical trial: a qualitative study.

Objectives

Design

Setting

Participants

Results

Conclusions

Publications

Recruiting ethnic minority participants to a clinical trial: a qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets