As our understanding of research and data has changed, so have data collection methods. Consequently, qualitative researchers are actively seeking to expand traditional interview and survey techniques, looking to reduce the power differential between researcher and participant and getting closer to participants' experiences and emotions. This was also the starting point for my development of identity boxes.
I explore identity under the influence of fibromyalgia. Fibromyalgia is a complex and contested condition that is characterised by widespread, persistent pain, chronic fatigue, cognitive dysfunctions, sleep disturbances and psychological disorders [1]. Typically, symptoms wax and wane, change and move within days, often within hours. Most fibromyalgia research relies heavily on interviews, questionnaires and surveys, and focuses mostly on the pain aspect of the condition. I wanted to explore fibromyalgia more holistically to account for and concentrate on the complexity and elusiveness of the fibromyalgia experience.
Language is often insufficient to adequately express sensations and feelings [2] and human understanding is embodied [3] and founded in metaphors [4]. Therefore I developed a research approach that involved identity boxes [5]. Participants were asked questions and required to identify objects to represent their answers. They then placed these objects into a box, took a photograph and emailed the photograph with a very brief statement of what the objects were and what they stood for. Then the next question would be released. There were five questions: 1. Who are you? 2. What affects you? 3. How do others see you? 4. What role does fibromyalgia play? 5. What does life with fibromyalgia feel like?
I carried out preliminary analysis of the objects and emails to extrapolate key issues and questions, which were then discussed in a video-interview by Skype. Through the work with the identity boxes, participants were effectively practising phenomenology, in that they considered the entirety of their experiences, reduced that to a specific essential element, which they subsequently elaborated on and explained in the conversations.
The data generated through this process was immensely rich for three main reasons. Firstly, the tasks meant that participants were provided with specific tools for reflective practices. Even participants who would not usually keep journals or engage in regular reflective cycles and practices were able to deepen their thoughts and access levels of reflections that went far beyond the superficial description. Secondly, the approach made use of creativity and playfulness within the research process. Consequently, this meant participants felt they were engaging in a creative, fun activity and so were keen to engage with the process without experiencing interview-fatigue. Thirdly, participants collected and collated personal items that were particularly meaningful and relevant to them, and were therefore emotionally more engaged. For example, in response to the question "Who are you?" one participant added one gardening glove into the box. In her email she stated briefly that she saw herself as a gardener, as she enjoyed gardening and working outdoors. However, she had only added one glove, because she did not consider herself as very good at it, as her condition made certain work unbearably painful and difficult for her.
Research work with objects and metaphors for elicitation purposes is not new and its effectiveness is well documented. My innovation came in that I did not interpret the objects as a ‘way in’ to the minds and thoughts of participants, or as stimuli for conversations. For me, the objects themselves counted and count as data. There is something to be said about the meaning of the objects, of how participants organised their boxes and of how and where they placed their objects. The image is a good example, as the participant separated the objects related to her character and personality from the objects representing life with fibromyalgia. Through the project she realised that she was not "just the ill person", but that there was "more to" her, a realisation that is clearly reflected in the arrangement of her identity box. Currently, I am developing an approach to data analysis that includes, accounts for and focuses the objects in identity boxes to further our understanding of what constitutes data within qualitative research.
References
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White, K., & Harth, M. (2001) Classification, epidemiology, and natural history of fibromyalgia. Current Pain and Headache Reports 5, 320–329.
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Sontag, S. (2003) Regarding the pain of others. London: Penguin Books.
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Finlay, L. (2015). Sensing and making sense: Embodying metaphor in relational-centered psychotherapy. The Humanistic Psychologist 43(4), 338–353.
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Lakoff, G., & Johnson, M. (2003) Metaphors We Live By (Reprinted). Chicago, IL: The University of Chicago Press.
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Brown, N. (2018). Exploring the lived experience of fibromyalgia using creative data collection. Cogent Social Sciences.