This chapter presents a brief overview of the project design as well as the collaborative approach taken to researching asthma within South Asian communities. The project was a community-based study designed with four main phases (see ) and utilised a participatory approach throughout. The design was informed by the socioecological model of health (see ) and drew on principles of qualitative inquiry and methods of IM (see ). Given the methodological complexity of the study, a more detailed description of the methods and the sampling that relate to each particular phase of the study is provided at the beginning of the appropriate chapters.
The stages of the MIA project.
Overview of design and methods
The phased project structure was designed to enable the research team to build iteratively on findings from each stage and to use this to guide subsequent stages of the research. Iterative working requires flexibility and, thus, despite the apparently linear structure, there was a degree of overlap between the stages (). A brief overview of the stages is described below.
Phase 1: systematic evidence synthesis
Phase 1 was a systematic evidence synthesis of the barriers and facilitators to asthma management in South Asian children, funded by Asthma UK and conducted prior to the MIA project. While this review was an important prestudy activity which contextualised the subsequent phases, it was not funded as part of the MIA study and is therefore not discussed at length in the rest of this report. An overview can be found in Appendix 1 with a copy of the report available online (www.asthma.org.uk) later in 2013.46
Phase 2: community study
Phase 2 of the MIA study was a study of community perceptions designed to explore lay understandings of asthma and its management in children. The objectives of phase 2 were to understand the South Asian community perceptions of asthma and to gain an understanding of the ways in which families of children with asthma are perceived and treated by the wider community. Community focus groups and key informant interviews were used to explore lay perceptions among a range of individuals and groups and to take into account the wider cultural, religious and socioenvironmental context of a potential intervention targeted at asthma. The research team, in partnership with CFs, developed interviews and focus group question schedules built on the findings from the review in phase 1.
Phase 3: families and healthcare professionals study
Phase 3 aimed to explore the perceptions and experiences of families living with childhood asthma (South Asian and White British) and experiences of healthcare providers who had supported or treated South Asian children living with asthma, with a particular focus in barriers and facilitators to its management. Semi-structured interviews were carried out with South Asian children and their parents or carers to discuss and explore perceptions and experiences of living with asthma. A subsample of White British families were also interviewed in order to further clarify the role of ethnicity in determining barriers to management by assessing the perceptions of the ‘majority’ White British population (see Chapter 4). Semi-structured interviews were carried out with HCPs involved in the management of children with asthma. As the primary aim of the study was to develop tailored interventions for South Asian children, HCPs were asked only to comment on their experiences and work with South Asian children and their families (see Chapter 4). No attempt was made, therefore, to ask HCPs about perceptions regarding the care of White British children. Interview schedules were developed in partnership between the research team and CFs in response to the initial findings from phases 1 and 2.
Phase 4: development of potential collaborative intervention strategies
The aim of this substantial and iterative phase was to synthesise the data from all previous stages and to develop an intervention planning framework and exemplar programme for South Asian children with asthma. The objectives were to enable collaborative intervention development, and produce an acceptable and achievable intervention plan for asthma management. Findings from the phase 1 review, the phase 2 community study and the phase 3 family and HCP study were integrated, discussed collaboratively at workshops with families, HCPs and community members and refined into the final intervention planning framework and exemplar programme. This complex process was guided by principles of intervention mapping and took place following the process described in more detail in Chapter 1. Following on from the collaborative intervention development, the research team gathered data on participants’ experiences of the methods of intervention development to feed into a reflection and review of the process of collaborative development. Short semi-structured interviews were conducted with a sample of study participants, team members and advisory group members to explore their experiences of this method of intervention development. The data from these interviews was used to contribute to the team’s reflection on the process; a component of the iterative approach adopted, with a view to improving the process when applied to future projects.
The research team and advisory group
The multidisciplinary research team included academics from the following disciplinary backgrounds: academic and clinical paediatrics (ML, DB), social science (MJ, LC and NH), clinical psychology (NR), nursing (MMcF), respiratory paediatrics (JG) and health psychology (CHW). A South Asian parent representative, (NJ), was also a member of the core research team and worked in partnership in each phase of the study, from the initial design of the protocol and research design, to managing the study, taking part in project activities such as team meetings, running workshops, discussions and reviewing related literature including the final report. Additionally, the core team were supported by a group of ‘community facilitators’: bilingual members of South Asian communities who were trained as lay researchers to assist with all stages of the research. This method was employed as part of the participatory, inclusive research design and is described in more detail below.
A multidisciplinary advisory group was set up in order to assist the team to carry out the research and to include the perspectives of those with a stake in the research. The group therefore included representation from the following areas: paediatrics, public health, general practice, commissioners and children’s services (including service managers, school nurses and paediatricians). South Asian parents of children with asthma were also represented on the advisory group. Both parent representatives on the project (NJ and SA) had children with asthma and were involved at all stages of the research. As part of her role in the advisory group, SA also participated in study recruitment, development of data collection tools and in the running of the children’s workshops.
Collaborative research engagement: the role of community facilitators
The communities which collectively constitute the category ‘British South Asian’ represent approximately 4% of the UK population, yet as with most minority ethnic groups, South Asians remain significantly under-represented in clinical research trials.86,126 This tendency to exclude certain groups from research persists despite the fact that there is now a well-established and growing body of literature that describes how and why members of minority ethnic communities should, and can, be effectively engaged in research.127,128 Researchers from the USA and the UK suggest that, to successfully recruit South Asian participants, developing a sense of trust between researchers and participants is of vital importance,128 in addition to consideration of specific language needs in securing informed consent.127
The MIA project engaged community members as partners rather than subjects, involving them in all stages of research, from identifying research questions to recruitment, developing an intervention, interpreting research findings and disseminating results.
Engaging community members as collaborators is powerful on multiple levels.129 Developing a research project from the bottom up and working with the community members to identify important issues and factors has the potential to improve a population’s participation and enthusiasm for a project, which can subsequently mobilise the community in addition to improving the effectiveness of the intervention.
Previous research has suggested that, to engage successfully with minority ethnic groups, earning the trust of potential study participants is important.87 Strategies to achieve this include ensuring ongoing involvement with community groups, key community representatives and faith organisations, with emphasis placed on the employment or involvement of community representatives as study personnel.66,127 Personal contact with key community representatives is also described as essential by those with positive previous experiences of recruiting minority participants.87 A personal touch, including face-to-face contact, is seen as instrumental to building relationships between research staff and members of minority ethnic communities.87 In the MIA study, this collaboration and engagement was achieved by tailoring recruitment, consent and participation in the study in a number of ways.
A team of male and female CFs were actively involved in all stages of the study. The inclusion of CFs in carrying out research is an approach adopted previously by members of the team130,131 and was designed to facilitate the engagement of participants from across a number of South Asian communities. This approach was designed to allow participation by those whose first language was not English; to provide participants with a choice of facilitator or interviewer in terms of sex and ethnicity; and to ensure that the research was relevant to the communities involved.131 The CFs facilitated a relationship between the research team and the local communities, with many authors suggesting that the role community partners and liaisons play in recruitment may significantly improve the effectiveness and retention of minority participation in research.129
All of the female CFs had previous experience of research involvement in studies with South Asian communities, while the male CFs were recruited following recommendations from the existing CFs. The facilitators were chosen based on their relevant language skills (Bengali, Gujarati, Punjabi and Urdu), sex, and identification with and knowledge of the four communities to which the study was being undertaken in. Linguistic skills alone were not considered adequate and, to ensure that a positive rapport was developed between the CFs and the participants, cultural and religious familiarity with the intended research participants was also essential.131 Training on both research methods (e.g. refresher training) and asthma management was provided for the CFs by the research team.
The CFs utilised personal contacts and a snowball sampling method to recruit participants from within their respective communities. They provided verbal explanations of the research process and discussed the study information with potential participants in their preferred language. The CFs were instrumental in enabling verbal-consent procedures when English was not the participant’s preferred language, having been previously trained in this method in sessions with the research team. The use of spoken study information and verbal consent was essential as there were no agreed written consent forms in several South Asian languages, such as the Sylheti and Mirpuri dialects. Research indicates that literacy, even in a native tongue, can be very low among some South Asian communities.132,133 While informed consent is considered preferable in written format, verbal consent was considered more appropriate at times when participants were non-literate134–137 (see Appendix 2).
The CFs were involved in the development of the data collection tools, organised and facilitated focus groups in the appropriate languages and assisted the research team in conducting family and key informant interviews when necessary. When focus groups or interviews were held in languages other than English, the CF also worked in partnership with the research team, asking questions in the chosen language and providing brief on-the-spot translations for the research team such that any follow-up questions could be asked spontaneously by either the research team or the participants, supporting an interactive, real-time dialogue between the two. At the study workshops, the CFs provided translations of the verbal presentations in five languages and facilitated table discussions. During the analysis process, the CFs attended group meetings to review and discuss the interim results, and to ensure correct understanding of translations and to ensure cultural sensitivity.
The CFs advised the research team throughout the study on how best to maximise community engagement. This was an iterative process and at different phases the research team sought advice from the CFs in order to ensure that engagement with the community was as successful as possible through the utilisation of appropriate financial and human resources. Examples of advice provided included profiles of key informants that they considered important to be approached for the study, venues for workshops that would be more appealing to the different groups, considerations required when choosing the day on which workshops should be held and considerations regarding cultural acceptance of food to be served at the workshops.
Participatory workshops were part of the collaborative design of the study. Dialogue between the research team and the participants at the workshops allowed the team to collect direct feedback on the processes involved. Members from the voluntary sector organisation, Asthma UK, also attended the workshops, providing an opportunity for families who attended to opportunistically learn more about asthma and the support available.
Several community-based organisations were actively involved in the recruitment or provision of key informants. These included Clarendon Park Temple (where study participants and key informants were recruited from); Bengali women’s groups (where Bangladeshi women were recruited for the focus groups); the Federation of Muslim organisations (aided with recruitment and provided several key informants); and Leicester Central Mosque (provided a key informant). A number of other local community centres were used for events and workshops as well as providing key informants.
Collaborative research engagement: the role of children
Children were involved in several aspects of the MIA study to enable us to effectively include their perspectives. It is considered good practice to engage children in decisions about their own health; however, parents are often invited to speak on behalf of their children. The age range of children included in the MIA study was 5–12 years and can be considered young. Research has demonstrated, however, that even young children can effectively respond to research participation.97 A variety of approaches were utilised to encourage children to communicate with us, both in interviews and at the workshops. This encouraged the bidirectional sharing of information and enhanced the relevance of the whole research project. The children were actively involved in the workshops and contributed to the intervention design through helping to prioritise specific research areas. Teenage ‘peer’ facilitators (aged 14–16 years) were used to put the children at ease, to promote engagement between the research team and the children and, therefore, to enable meaningful participation by the children at the workshops. Further information regarding children’s involvement in the MIA study can be found in Chapter 4.
Recruitment
There were two avenues for recruitment in the MIA project: through the NHS or directly through the community. NHS recruitment drew on primary care research networks (PCRNs) and comprehensive clinical research networks (CLRNs) to recruit through pharmacies, GP surgeries, emergency primary care, and hospital and community paediatric clinics using standard NHS ethics and recruitment procedures (see Appendix 3). Community-based recruitment involved CFs who drew on methods such as snowballing, telephone and mail shots (for all recruitment methods see Appendix 3). The recruitment process used by the CFs (and throughout the study) was a standard three-step approach (see Appendix 2). In addition to through the CFs, the study was advertised using posters, flyers, and university and research websites. A study website (www.http://mia.ocbmedia.com) was designed to signpost individuals to study information in English and translated into the main South Asian languages relevant to our study, available in both written and audio formats to enable those with low literacy to still engage with the research project.
Ethical considerations
Ethical approval was gained through the local NHS ethics committee, university ethics and NHS research and development (R&D) approval. National Research Ethics Service (NRES) procedures were used throughout the study to minimise distress to participants and safeguard anonymity and confidentiality, as well as providing a guarantee for a continued standard of care (see Appendix 2 for further details regarding ethics and consent procedures).
Chapter summary
This chapter has given a brief overview of the research design, the methods used, the team structure and the overall participatory approach. Individual chapters provide a more detailed description of the methods as well as a breakdown of the resulting sample for each phase.
