The loss of a baby during or after pregnancy is, sadly, an everyday occurrence in the UK. According to latest figures from the NHS (2019) around 1 in 8 pregnancies ends in miscarriage, stillbirth happens for 1 in every 200 births in the UK, and over 200 babies die of Sudden Infant Death[1]. While baby loss is a common ‘everyday’ occurrence, it is also a deeply traumatic and life changing event for those concerned, thus reinforcing what sociologists often refer to as the co-existence of the ‘everyday’ and the ‘extreme’. Post-mortem in this field is a particularly emotive subject, often deemed just too difficult to talk about and conduct research into. In this article, I want to emphasise the value of doing social research in highly sensitive and difficult areas, drawing on my ESRC funded research on the pioneering use of Magnetic Resonance Imaging (MRI) in fetal and neonatal post-mortem. Through this process I seek to articulate the need for sociology to tackle some of the more difficult and challenging issues that we face as we study everyday social life.
Based in a Northern city in the UK, our project aimed to understand how parents/families who have experienced baby loss feel about, and experience, the (MRI) post-mortem process. It also aimed to explore the impact of this new technological application on professional practice and relationships between professionals from different fields. We took an ethnographic approach to the research, exploring the role of MRI in the wider post-mortem landscape and broader context of grief and memorialisation. We pioneered the use of go-along ethnography in this context, conducting mobile observations and in-depth interviews with different professionals whose work informed post-mortem- from midwives through to coroners- in the hospital and beyond (Reed and Ellis 2019a). We also conducted interviews with bereaved parents and other family members, exploring their experience- from life through to loss- inviting them to bring memory items to interviews in order to facilitate discussion.
This project was certainly difficult at times, but not always in the ways that we might expect. While ethnographic observations which took place in the mortuary could prove emotionally challenging, listening to parent stories and professional accounts was often equally distressing. Reading interview transcripts after data collection could also be deeply upsetting, as respondent accounts were often re-lived by the researchers. Despite these difficulties, however, we managed to collect some important information about parent and professional’s experiences and views on post-mortem and the role of MRI. One of the most important and life affirming findings related to the uncovering of hidden care practices that take place in the mortuary as professionals sing to, bathe and dress babies in their care (Reed and Ellis 2019b). These findings were reflected in Remembering Baby– a collaborative art exhibition open to members of the public which toured the UK in 2017-2018.
This research has been one of the most rewarding experiences of my sociological career so far. As well as enabling me to craft some high quality academic outputs, the research has also had significant impact on bereaved parents, charities, and health professionals, and we were awarded the ESRC Outstanding Societal Impact prize in July 2019. It has changed the way I conduct social research and also deeply informed the way I teach, particularly the training I run for PhD students in sociology and other disciplines across the social sciences. The research has taught me the value of collaborating with non-academic partners, as well as the intellectual pleasure that can be found when we conduct research which is rooted in sociology but engages disciplines across the social sciences and beyond. Most importantly, perhaps, this project emphasises the ways in which research on difficult and taboo topics can enrich people’s lives (including those of the researchers).
PhD students and early career academics often share their anxieties about embarking on research which is sensitive in nature. Thankfully there is now a growing body of literature that can help students and academics considering research on difficult topics (in areas such as death and dying, sexuality and domestic abuse) to navigate some of the most challenging issues. Such literature often centres on the importance of self-care and the care and safety of participants (Dickson-Swift et al 2009, Johnson & Clarke 2003, McCosker et al 2001). Whenever I am invited to talk about sensitive research, I also seek to stress two key issues: firstly that sensitive research is not something to be feared and avoided but approached ‘sensitively’ and secondly that it is ok to ‘feel’ things and get emotional during research. The methodological concept of Verstehen, first advanced by Weber, emphasised the importance of developing empathy and deep understanding of other peoples’ actions and experiences. To feel things deeply in research not only helps to facilitate the collection of good quality data, but, can also act as an important reminder of why we do social research in the first place. Everyday social life is ‘dual-edged’, it can be pleasurable, but is also often fraught with experiences that are deeply traumatic and challenging. As sociologists we need to make sure we incorporate accounts of this difficult side of life into our analyses, no matter how hard and uncomfortable that might be.
References
Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2009). Researching sensitive topics: Qualitative research as emotion work. Qualitative Research, 9, 61–79.
Johnson, B., & Clarke, J. M. (2003). Collecting sensitive data: The impact on researchers. Qualitative Health Research, 13, 421–434.
McCosker, H., Barnard, A., and Gerber, R. (2001) Undertaking Sensitive Research: Issues and Strategies for Meeting the Safety Needs of All Participants Forum: Qualitative Social Research, 2(1), http://www.qualitative-research.net/index.php/fqs/article/view/983/2143
Reed, K., and Ellis, J. (2019b). Uncovering Hidden Emotional Work: Professional Practice in Paediatric Post-Mortem. Sociology. https://doi.org/10.1177/0038038519868638
Reed, K. and Ellis, J. (2019a) Movement, materiality and the mortuary: Adopting go-along ethnography in research on fetal and neonatal postmortem Journal of Contemporary Ethnography 48(2): 209-235
[1]For information about different types of baby loss please see https://www.nhs.uk/
Professor Kate Reed is Director of Doctoral Training Programme at the University of Sheffield.