Chapter 2 Literature review
3.8. Writing the thesis ‘reflexivity’, emotion work
The notion of reflexivity is important in relation to qualitative research. Rather than a fixed self, engaged in research, Lincoln and Guba (2000) argue that the self is fluid in the research setting and is also created in the process of the
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research. Reflexivity, they argue, can be linked to a process of coming to know oneself better within a research project.
The process of undertaking research in an emotionally sensitive area meant there were risks to both researcher and participants’ emotional well-being. As discussed earlier in section 7, to protect parent carer participants, the NHS ethics committee put in place certain conditions, such as informing the parent carer participants’ GP about their involvement in the research. No safeguards were put in place regarding the researcher. However, I had access to my supervisors who were aware of the nature of this research and they ensured they were available, if needed. Nevertheless, the research process was characterised by a number of ethical dilemmas and negotiating the qualitative fieldwork process was both an intellectual, practical and emotional challenge (see Loughran and Mannay, 2008).
The impact of emotion on social researchers has been noted by many authors (e.g. Grinyer, 2004; Johnson and Clarke, 2003; Carter and Delamont, 1996). The proximity of the researcher to what could be considered a distressing research topic can mean that there will be an emotional cost in such studies (Fincham, Scourfield, and Langer, 2008). Some of these authors suggest that emotion can be harnessed creatively as part of the interpretive process.
A decision was made to exclude participants who had experienced bereavement. However, the risk of making a decision based on protectionist reasoning is that
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researchers then exclude the participation of some groups from research, based on concerns for their vulnerability (Carroll and Mesman, 2018). As researchers, emotional reflexivity is necessary to ensure inclusive research and this inclusiveness necessitates an engagement with, rather than an avoidance of painful experiences (Carroll and Mesman, 2018).
Despite the decision not to interview bereaved parents and the efforts to ensure this sampling frame, two parents I interviewed mentioned during the interview that they had previously lost a child. This was unexpected, and I had to reflect in action (Schon, 1991). Those parents were offered the chance to withdraw from the interview or take a break. Nevertheless, both parents chose to continue, making this decision to contribute to the research for themselves where other bereaved parents had been excluded by my initial protocol. This example raised questions about who decides what ethical practice means and the ways in which participants can become excluded from this process in attempts to follow established guidelines that position the researcher and institution as the expert.
In relation to this research, a further point of reflection was my awareness, as stated above, of having several identities, which could impact on the research process. The impact could be positive or negative. In social work this is referred to as ‘use of self’ (Trevithick, 2018). The use of self in social work practice is the combining of knowledge, values, and skills gained in social work education with aspects of one's personal self, including personality traits, belief systems, life experiences, and cultural heritage (Dewane, 2006).
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The identities are as a researcher, a parent (researching other parents), a social worker, and as a member of the BME group. These attributes positioned me as an insider, outsider and transient insider in the field (Morriss, 2016; Palmer, 2018), and engendered both advantages and limitations. For example, advantages included the fact that having a South Asian name acted to negotiate some barriers to participation by some BME participants. The majority of parent carer participants recruited for the study were of South Asian ethnicity. Furthermore, some of the families spoke little or no English, and were only able to speak Urdu and Punjabi, languages which I speak. This meant gatekeepers based in organisations, referring parent participants, did not have to exclude families who did not speak English.
Being a social worker may also have been an advantage when accessing the professional participants working in social care. Additionally, due to my practice experience, I was able to understand the medicalised language and terminology the parents often used when discussing their child’s condition and care needs. However, as a result, some assumed I must share their experience so they would ask if I also had a child with an LLC. This form of questioning was very uncomfortable for me. At no point did I have any intention to lie to the participants, but I was afraid that they would see me as an outsider and may be guarded during the interviews, or even refuse to participate. In response, I explained that I had some understanding of their experience due to my professional experience only.
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The participants were happy with this explanation and, despite my concerns, it did not result in creating a barrier to participation.
It is important to acknowledge how our identity, attitudes, and beliefs can impact on the research process. For example, how we interpret data is inevitably influenced by personal experiences and values (Guba and Lincoln, 2005). These elements cannot be eliminated from the research process but need acknowledgement and guarding against.
Factors that made me part of the parent group were: my ethnicity, my ability to speak some South Asian languages, being a parent, my knowledge of the health and social care system they were navigating, and my understanding of the medical conditions of their children, and the highly specialised language and jargon they used. What made me an ‘outsider’ with parents included: not being the parent of a child with LLCs, all my experience being professional, rather than personal, and the fact that I was a social worker.
With professionals, it was similar but different. They appeared to not notice my ethnicity. Interviews with some of the professionals could be challenging when they referred to BME families as ‘they’ and ‘them’ and if they made strong statements based on assumptions or racial stereotypes. In this way, it seemed that I was viewed as part of an ‘in’ group through my standing as a previous professional in social work, and my ethnicity appeared to have no impact in terms of forming a barrier in that professional participants were open about their views
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and beliefs regarding BME families. There were regular micro-aggressions, sometimes before or after the interviews, which I needed to guard against. I did not want to allow my reactions to influence or negatively impact on the research process. It was important that I did not allow my body language to betray these feelings or to react in a way that participants would notice (see Lisiak and Krzyzowski, 2018).
Rather than attempting to engage with my study under the guise of an ‘objective’ researcher, exploring these facets of my identity and positionality, relationally, enabled me to be reflective and reflexive both in the field and in the analysis of the qualitative data. It is hoped that this has produced a more nuanced analysis of the data, which will be presented in the following chapters.
3.9. Conclusion
This chapter restated the research question that this study aimed to address, and outlined how the methods selected were chosen specifically to attend to these research questions. It described the quantitative and qualitative methodology adopted to explore the issue of support systems of the families of BME children with LLCs. A mixed methods approach was adopted, with emphasis largely on the qualitative element. The quantitative element focused on the experiences of children with LSIs, as this process drew attention to the paucity of existing
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quantitative data in relation to children with LLCs, as well as ethnicity data. The qualitative interviews were conducted with twenty parent carers and ten professionals working in social care, health and education. Interviewees were from Wales and England, and all interviews were carried out either in English, Urdu, or Punjabi. The challenges of obtaining ethical approval were also discussed. The rationale for extra vigilance was due to the topics being addressed considered as emotionally sensitive. The parent carer participants were also a potentially vulnerable group (due to possible language barriers, and the risk of causing upset by asking questions about their child) and measures were adopted to mitigate this risk. There were many challenges to this process, which made me realise why this may be an under-researched area. Many lessons were learned as a result of going through the process of applying for NHS ethical approval and trying to access participants (the parent carers in particular). However, these efforts resulted in rich data, providing insights into an area that little is known about. It allowed me to engage with parent carers of BME children with LLCs and to include their voice in the academic discourse, which was hitherto lacking. The findings generated from the collection, production and analysis of this data will be presented in the following chapters.
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