Internalising ‘sensitivity’: vulnerability, reflexivity and death research(ers)

ABSTRACT

Research about dying is viewed as inherently sensitive because of how death is perceived in many societies. Such framing assumes participants are ‘vulnerable’ and at risk of ‘harm’ from research. Simultaneously, with increasing recognition of the importance of reflexivity, researchers can become (deeply) preoccupied with their actions and experiences in the field. Whilst reflexivity is often described as a helpful process, in this paper we consider when introspection becomes problematic and even harmful for death researchers, in both a professional and personal sense. Identifying a process we call ‘internalising sensitivity’ the paper describes our own experiences of working and living with the pervasive ethical notions of sensitivity, vulnerability, risk and harm. We argue that these discourses can get ‘under the skin’ of researchers in that they impact researchers intellectually, emotionally, and physically, and this in turns affects their relationship with the research process and their place within, and beyond it.

KEYWORDS:

• Ethics
• vulnerability
• reflexivity
• sensitive research
• death studies

Acknowledgments

The authors would like to thank the people who have all been part of their studies and those that have supported them along the way. Additionally, the authors would like to thank the editors and reviewers for their feedback on earlier drafts.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. Malcolm and Tracey participated in a series of interviews for Julie’s research. They were married and both in their 50s. Malcolm was living with a terminal cancer diagnosis.

Additional information

Funding

Ellis’ doctoral research was funded by an Economic and Social Research Council Studentship; grant reference PTA-030-2005-00154. Borgstrom’s doctoral research was funded through a National Institute of Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC) for Cambridgeshire and Peterborourgh doctoral scholarship held at the University of Cambridge.

Notes on contributors

Erica Borgstrom

Dr Erica Borgstrom is a Lecturer in Medical Anthropology and End-of-life Care at the Open University. She has published on a variety of issues relating to end-of-life care and death studies, and has co-edited with Dr Julie Ellis and Dr Kate Woodthorpe a book about researching death, dying and bereavement. She is co-editor for Mortality and sits on the council of the Association for the Study of Death and Society.

Dr Julie Ellis is a Senior Lecturer in Sociology of Health and Illness at the University of Huddersfield. Her research interests include personal relationships, death, dying and bereavement, materiality and the everydayness of illness experience. She was recently the co-convenor of the British Sociological Association’s Social Aspects of Death, Dying and Bereavement study group and is on the editorial board for the journal Mortality.