South Asian People With Asthma
It has been argued7 that the exclusion of minority ethnic groups from clinical research is unethical and results in findings which are based on unrepresentative populations, which is hence biased10. The possible exclusion of minority ethnic people from clinical research not only undermines the Government's NHS strategy for tackling inequalities11, it also potentially fails to meet the legal requirements set by the amendment to the Race Relations Act12, in which all public agencies are charged with promoting diversity, and tackling institutional racism and discrimination within their organisations13.One area in which the problem of minority ethnic under-representation in clinical research is particularly prevalent is the field of asthma, where it has been noted there are marked disparities in health outcomes between ethnic groups14. Asthma is a chronic obstructive inflammatory disorder of the lungs13, affecting around 300 million people worldwide15. Ethnic variations in the prevalence, severity and management of asthma have been reported by a number of authors16,17,18,19,20 and recent research has shown that when compared with their White European counterparts, South Asian people were three times more likely, and Black people twice as likely to require an emergency hospital admission for their asthma20. While the reasons behind these poor outcomes remain unclear21, a recent systematic review and meta-analysis of UK data has clearly demonstrated that the differences in patient outcomes cannot simply be explained by variations in asthma prevalence20. The researchers' found no evidence of increased frequency of asthma in these two ethnic groupings and, if anything, prevalence was found to be lower in both the minority ethnic groups in question20. It has been noted Frampton et al 2009 that researchers need to consider the importance of population differences in asthma morbidity, mortality, responses to management, access to healthcare and opportunities for pharmacogenetic therapy, whilst taking into account the difficulties in recruiting relevant population groups in asthma clinical studies. Building on the work of Sheikh et al2009, we sought to understand the nature of barriers to participation in research from the perspectives of lay South Asian people with asthma and identify facilitators for the recruitment and retention of these populations into future asthma studies. The term South Asian has been used in this study to refer to those individuals whose ancestral origin lies in the Indian subcontinent i.e. India, Pakistan and Bangladesh, and includes those born in the UK and others migrating to the UK via a third country 22. South Asians represent the UK's largest minority ethnic group accounting for around 4% of the total population23, yet to date there is a paucity of UK based research exploring the experiences, motivational factors and beliefs of South Asian people invited to participate in asthma research. With mounting concern regarding the under-representation of minority ethnic groups in clinical research, there is a pressing need to gain further understanding of the barriers and facilitators to inclusion of these populations in research.
Focus group discussions were conducted in both Edinburgh and London with UK South Asian people with asthma and parents / carers of asthma sufferers. In addition, all participants were invited to complete a supplementary demographic questionnaire (see Appendix 1) in which ethnicity was self-reported. Ethical Issues Ethics approval was obtained from St Mary's Hospital research ethics committee and research governance approvals were obtained from Lothian, London, Brent, Harrow, Tower Hamlets, Barts and the London and Charing Cross and Westminster research and development boards. Individually signed informed consent was also obtained from all participants.Sampling and RecruitmentBoth South Asian and White European people with asthma, and parents / carers of asthma sufferers were identified through a combination of recruitment from GP surgeries, respiratory clinics and a direct approach through community and religious centres in contrasting areas with relatively large and concentrated (London) and relatively smaller and dispersed (Edinburgh) South Asian populations. Purposive, maximum diversity sampling techniques were adopted by the research team in order to ensure sampling of males and females from differing ethnic (Indian, Pakistani and Bangladeshi), linguistic (Hindi, Urdu, Gujarati, Punjabi, Sylheti), religious (Hindu, Muslim and Sikh) educational and socioeconomic backgrounds were included in order to be fully representative of the UK South Asian population. Focus groupsData were generated from nine focus groups which were held during the period of June 2006 - May 2007. When planning the focus groups, every effort was made by the research team to ensure gender and other preferences were respected, and linguistic abilities catered for in order that participants could communicate opinions freely. Groups were conducted in the language of the participants choosing and were facilitated by an experienced qualitative researcher and social anthropologist (LH), who is of Indian Muslim Gujarati origin and is fluent in a range of South Asian languages. Group discussions lasted between 60-90 minutes with a literature-based topic guide used, where necessary to stimulate relevant free-flowing discussion. Data handling and analysisThe focus group discussions were, with permission, digitally recorded, translated and transcribed in full. Data were analysed using the Framework approach, an applied qualitative method developed for social policy research, which is particularly suited to handling large data sets24. Data analysis occurred as an ongoing process during data collection, enabling emergent themes and ideas to be incorporated and explored in subsequent focus groups. The following key stages to analysis were adopted by the researcher: familiarisation and immersion in the data, identification of a thematic framework; indexing; charting; mapping and interpretation. Coding, assisted by N-Vivo 7 software was undertaken in a series of iterative steps, with an initial code list used to organise the transcripts of the first two focus groups. The initial code list was constructed of a priori codes derived from both the national and international literature in this area and the topic guide used by the researcher (LH) leading the focus group discussion (Appendix II). This initial code list was then refined during review and analysis of subsequent focus groups and LR (clinical research nurse) and AS (professor of primary care research & development) met regularly to discuss coding decisions and to achieve consensus. Several techniques were used to ensure procedural clarity and systematic, verifiable approaches throughout the analysis. These include consistent availability of the topic guide used to guide focus group discussions, digital audio-recording, independent preparation of the verbatim transcripts, checking of the translations against the original audio-file, standardised coding and analysis of the data and the creation of an analysis audit trail to document analytical decisions25. Deviant cases and possible conflicting interpretations were actively sought to assess the robustness of our findings and express a wide range of participant views. Analysis was further aided by regular discussions of findings with the broader multidisciplinary, multi-ethnic and multi-faith research team to check agreement with findings and assist interpretation. Data generation continued until the point of saturation26 i.e. the point at which no new major ideas / perspectives were emerging.
A total of 82 (73 South Asian / 9 White) people were approached to participate in this study. Of the 82 who were approached, 9 (4 South Asian / 5 White) declined and 11 (11 South Asian / 0 White) participants who previously displayed an interest did not attend focus group sessions. Sixty-two people (58 South Asian, 4 White; see Table 1) participated in the study with all 62 participants also completing the supplementary demographic questionnaire. Some of the findings from this study have reinforced findings in previous literature outside the field of asthma12,29,30,31,32,33,34, others however, have not previously been reported (see Figure 1). The findings from this study have been presented under the following headings: barriers to participation, motivations to participate and facilitators for successful recruitment.
Barriers to participation
Lack of approaches from researchers
Many participants had little or no experience of having been previously approached to participate in research themselves, or knew of any friends or family who have participated in asthma or any other form of research:Researcher: