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Lisa Hinton, Health Experiences Research Group, 9th December 2011

Reflections on Infertility Research

A train journey on dark winter night is a good time for reflection. Earlier this week I delivered my first Healthtalkonline project to the web team. “Experiences of infertility” will be up on the website in early 2012 and will mark the fruition of several years of work – five in fact. Far, far longer than the normal timeline for one of our projects. But the project was the basis of my PhD, and in those years I also went on secondment to the Health Select Committee for six months, and have been collecting interviews for another pregnancy related module. It feels like the end of a marathon.

What I really want to reflect on are the differences between approaching the interview data for different audiences, the academic community, fertility doctors and nurses and the general public.

In 2007 and 2008 I interviewed 27 women and 11 men about their experiences of infertility. I went to their homes, sat on their sofas and drank tea with them. I developed a rapport and filmed and recorded lengthy and often very moving interviews. Then those interviews became transcripts. My study became littered with box files full of them, alongside other box files full of academic literature on the sociology and psychology of infertility. For three years while doing my PhD, I thought about my interview data in relation to other academic literature and sociological theory. I studied the transcripts, the written word, and did not watch or listen back to the interviews. The interviews became texts. I explored and discussed many avenues with my supervisors (Sue Ziebland and Jenny Kurinczuk) but ultimately chose just five aspects to explore in great detail. The experiences of women and men, and their information and support needs were considered in the light of concepts such as “gender”, “stigma”, “social construction” and “biographical disruption” and sociology of the Internet. The time to immerse myself in my box files was a great privilege and I loved it. We’ve published in a peer review journal already (Lisa Hinton, Jennifer J Kurinczuk and Sue Ziebland (2010): Infertility; isolation and the Internet: A qualitative interview study. - Patient Educ Couns, 81(3):436-41) and have other articles planned.

But those sociological concepts are remote to the general public, and the interviews were collected to be part of Healthtalkonline. The process of revisiting the same interviews to write up for the website has been fascinating. In retrospect, I think it was great to have had a few months away from the interviews (while doing field work for my next project). When I came to start the Topic Summaries I felt daunted. There are 28, and I thought that each one would take as much writing as a chapter of a thesis. At 500-1000 words, I should have realised from the start it was going to be a different process. As I’ve been reading and writing over the last few months I’ve been struck by several differences. Firstly, I watched or listened to the interviews again, re-familiarised myself with the people I had met and interviewed a couple of years previously. Their stories (and living rooms) were fresh again in my mind, in a way they hadn’t been in the final days of writing my thesis. Second, the summaries were all about them. I didn’t need to balance what they were saying, or what I was arguing, by reference to other academic texts. I merely needed to represent what they had told me – to let them speak. Finally, in the those five years I had started to lose sight of whether anyone would ever be interested in these interviews apart from me (and my dedicated supervisors). Writing the Topic Summaries is perhaps a little like working on one of those fiendish 1000 piece jigsaw puzzles. As you start there are little pockets of clarity, but it doesn’t hold together or make sense. But slowly as you piece it together the whole becomes clear. I found that as I worked through the summaries I realised that these interviews and summaries were going to offer a valuable resource to people going through infertility, their relatives, their friends, and hopefully the doctors and nurses who treat them. I wrote 28 summaries ranging from when people first realised there was a problem through to how they talked to their children about donor conception, from experiences of a failed IVF cycle to being pregnant after IVF. In each summary, it is the people I interviewed, their voices, their experiences that shine through. In a couple of months they will be online for others to share. And meanwhile, it is time for me to clear out those box files.

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