Lloyd, Cathy; Johnson, Mark; Sturt, Jackie; Collins, Gary and Barnett, Anthony
(2008). Hearing the voices of service users: Reflections on researching the views of people from South Asian backgrounds.
In: DeSouza, Ruth and Williamson, Andy eds.
Researching with Communities: Grounded perspectives on engaging with communities in research.
Auckland: Muddy Creek Press.
Across the world, the prevalence of diabetes is increasing rapidly, and in the UK this is of particular concern in South Asian groups. Given the centrality of diabetes self-management to both policy and practice, it follows that research in this area, in particular to identify optimal ways of supporting those with diabetes in this regard, is required. However in groups whose main language is not English, such as those from South Asian communities, there are serious limitations to the research that has been carried out to date. In this chapter the difficulties of researching the views and life experiences of people with diabetes, with particular reference to issues around diabetes self-management, in those whose main language is not English, will be discussed and reflected upon.
An on-going study, the UK Asian Diabetes (UKAD) project, initially utilised self-complete measures to elicit views around self-care and knowledge of diabetes. This proved extremely challenging, in particular with regard to the authenticity or quality of the collected data. Hearing the concerns of those researchers who collected the data has led to the design and subsequent funding of a new study to investigate these issues further. This chapter will outline the UKAD study and discuss how that research experience led directly to the design of a further study to address those difficulties identified in the UKAD project.
A research team are currently developing alternative modes of data collection in groups of South Asians with diabetes. This research is led by a multidisciplinary group of academics and health care professionals and uses qualitative methods to develop new ways of collecting data in groups who can not read or write any language and whose main language does not have an agreed written form; namely Sylheti and Mirpuri. A key principle of this research is that service users are involved from the outset and play a pivotal role in the development of these data collection methods. This chapter will outline this research and will discuss the process of working in a multidisciplinary team alongside lay involvement in the project. It will debate the key issues of ‘authentic’ and ‘valid’ knowledge and consider the implications for collecting information and seeking out the views of those people from South Asian backgrounds who currently utilise health care services in the UK. The chapter will consider how ‘success’ is measured in research and the validity of the experiences of the ‘researched’ or service users, whose input into the research process is increasingly being considered as vital to the success of any project.
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