The analysis of the data raised a number of ethical dilemmas in terms of how involved the expert participants should be in the analysis, and the challenges that a non- disabled researcher has when analysing the narratives of women with learning disabilities. In Chapter 2 of this thesis, as part of the literature review, I critically analysed the literature on inclusive research. This led me to question whether the involvement of the women should extend to the analysis of the data, and if so, how, and to what degree.
Recent studies have shown that individuals with a learning disability participating in research can bring their thoughts and interpretation to the analysis of the data (Bunning and Steel, 2007; Stevenson, 2010; Tuffrey-Wijne, 2010), although this is not always a problem-free journey in practice (Minkes et al., 1994; Stalker, 1998). Over
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the past fifteen years there has been a rise in the number of inclusive research studies, and this has expanded our knowledge and changed the way that people with learning disabilities are viewed and included (Walmsley, 2004; Abell et al., 2007; Manning, 2009; Brookes et al., 2009). However, there remains a challenge in terms of the analysis of research data that still needs to be addressed; although there are some examples where inclusivity has been achieved, it is largely the non-disabled researchers who continue to lead the analysis of the data (Walmsley, 1995) and in some cases, the involvement has been described as tokenistic (Tuffrey-Wijne, 2010).
Often, the decision not to include participants in the analysis of the data has been partially based on academic requirements, set by institutions that are responsible for postgraduate research. Coleman et al. (2005) challenges the scientific and education communities, reminding them that rigid application of such requirements can have an impact on some population groups, and that these can be unethical. Williams (2005) suggests that involving those with a learning disability in the analysis of research is possible, and frequent periods of concentrated time helps to assist with their memory problems.
The expert reference group had not received training in analysing research data, and the initial information did not include attending any such sessions. . Therefore, the women experts were not requested to analyse the data, and their involvement in the analysis is be better described as consultative. The expert group were involved in discussions about the emerging codes that arose from the interviews and photographs, the development of themes and the model of having a good life (Figure 1, p.68). I tried to reconcile my decision to conduct the analysis with consultation by using some of the words, phrases, and photographs that the women participants had used to represent their experiences.
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On completion of this study, an easy-read version of the findings will be shared with the women participants and the expert reference group. Guidance is available from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215923/
dh_121927.pdf [last accessed 17/07/2016]. Easy-read is written information that often
supported by images, for example, pictures, symbols and photographs (Oldreive and Waight, 2013). An easy-read version of the key findings of this study will also be disseminated to the wider population of people with learning disabilities, and shared with those who provide or commission services for this population. As easy-read written information on its own is not always the best way of presenting information (Hurtado et al., 2014), , the contributions and the advice of the expert reference group will be included in future publications and presentations.
3.19 Conclusion of Chapter 3
This chapter began by discussing the epistemological position of inclusive research, and why this was selected as the partnership approach for understanding the experiences of ageing from the perspective of women with learning disabilities. The chapter then progressed to defend and justify the application of a mixed qualitative methodology that combines narrative and visual methods. This includes a discussion on how these two methods were integrated as a means of enhancing the one-to-one interviews with women with learning disabilities, and the involvement of the ERG. Some of the ethical challenges and dilemmas of carrying out research with women with learning disabilities experts were presented, both in terms of the literature and through personal experience. Within the chapter, there was an explanation on how ethics became an integral component that was considered throughout the research journey. The chapter also discussed how the population was defined, and how recruiting participants often required the engagement of families and professionals.
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In the next chapter, the qualitative analysis of the data that emerged from the individual interviews with each of the ten women is presented, alongside the photographs the nine women had taken. Each of the emergent themes is analysed using an asset- based theoretical framework to underpin the experiences of women and ageing.
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Chapter 4 FINDINGS
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4.1 Introduction
In Chapter 3, I outlined the methods that were used in this inclusive research study, and the narrative and visual approaches that were taken when working with the women participants and their individual accounts of their lived experience. In this chapter the findings that emerged from a thematic analysis of their narratives are presented. The thematic analysis of the findings essentially identify three internal, and five external, assets that sustained and supported the women in their lives; these assets are presented in this chapter as an alternative model to encapsulate and understand their lived experience of ageing.
The design of the asset model was based on the qualitative data and has been described in language that resonated with the women: ‘Having a Good Life’ (Fig. 1, p. 68). This model was developed with women who had shared their lived experiences of ageing through the expert reference group meetings. Direct quotations have been included to support the discussion, and these have been enriched by the inclusion of a selection of photographs taken by the women, included to add a visual context and provide further understanding of their lives. A specialist software programme has been used to blur the photographic images contained in this chapter, resulting in a low quality of photography. This has been carried out to protect individuals and respect their anonymity.
Building on innovative research undertaken with younger people (Scales and Leffert, 1999; Murphy et al., 2004, 2010; Whiting, 2012) in which health assets were mapped
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out at an individual and a community level, a thematic technique was used to facilitate the mapping of the internal and external assets that underpinned the women’s lived experience of ageing.