TELLING THE UNTELLABLE Researching emotionally challenging and sensitive topics

1. TELLING THE UNTELLABLEResearching emotionally challenging and sensitive topics ESRC Annual Research Methods Festival 2014 St Catherine’s College, OXFORD DR Denise Turner Claire Bennett Dept of Social Work & Centre for Social Care population change University of Sussex university of Southampton

2. Aims of the session…. To explore the challenges of researching subjects that may be painful for audiences to hear. To investigate the potential implications of these for knowledge construction To contemplate research from differing insider and outsider stances To consider how different forms of methodology and analysis may affect ways of ‘telling the untellable.’ To work in groups discussing the issues raised and how these may be relevant to participants’ own research experiences

3. A couple of questions to begin…! What is a ‘challenging’ topic? What is an ‘emotionally sensitive’ topic? Can you relate these to your own work and experience?

4. Two Personal Experiences1. Denise’s Research DESIGN… ‘Telling the Story : What can be learned from parents’ experiences of the professional response following the sudden, unexpected death of a child.’

5. ‘Rapid Response’ Immediate investigation by the police to gather ‘crucial evidence before it can be lost or contaminated.’ First hour after death – ‘the golden hour.’ Police treat all sudden , unexpected child deaths as ‘potential crimes.’ Child’s room and body are known as ‘crime scenes.’ Investigating police teams called ‘child abuse teams.’ Child’s body immediately becomes property of the coroner

6. Three major contexts for research: Professional Cultural Personal

7. Working with the personal in research… ‘Whether your own experience will affect the research is not the question – it will. For all researchers the big question is how to place that experience’ (Richards and Morse, 2007)

8. On the inside looking out: Some Advantages Possible Recruitment Benefits: ‘I only agreed to talk to you because you’d been through it’ Access benefits (double edged): ‘Whole professional lifetimes have been devoted to this…’ Epistemological/knowledge benefits: Pushing the boundaries of what is known/ how it is known: ‘Dangerous knowledge’ (Cooper & Lousada, 2005)

9. On the inside looking out: Some Pitfalls: Ethical Issues: ‘Then you know how I feel’ (Ellingson,1998) A ‘friendly façade’ (Thompson, 2002) Personal Issues: ‘Not behaving as a grieving mother should’ (Maggie) Academic/credibility Issues: ‘ The risk of having the work dismissed as some sort of victim art or confessional’ (Bochner,2000)

10. CULTURAL CONTEXT:The ‘Kennedy Report’ 2004(‘Sudden Unexpected Death in Infancy’ : Royal College of Pathologists and Royal College of Paediatrics and Child Health.) ‘Parents suffering terrible tragedy need sensitive support to help deal with their loss……appropriate training was a recurring theme in our work –for police officers, for doctors, for nurses, for social workers and for coroner’s officers. Good communication between professionals and parents is vital, but professionals should also be sensitised to emotions being experienced by parents. …much of this can be learned. Simple, practical training is important.’

11. Final Sample : Eight parents (7 women and one man) : All had experienced sudden, unexpected death of their child and investigation but without charges. Time since death: Between 10 months and 21 years… Six recruited through adverts on Charity websites. One known to me. One the relative of a friend – all assigned pseudonyms – Cathy, Andy, Julia, Laurie, Ellie, Hafsa, Chrissie and Terri.

12. METHODOLOGY Unstructured narrative interviews based on Biographic Narrative Interpretive Method (BNIM) (Wengraf, 2011)…. All interviews began with a ‘SQUIN’ (Single Question aimed at Inducing Narrative ) : ‘Please tell me the story of…..’s death…all the events and experiences that have been important to you personally. Begin wherever you like. I’ll just listen, I won’t interrupt. I will just take some notes for afterwards.’ Interviews transcribed

13. ANALYSIS BNIM uses data analysis panels to ‘kick start’ the interpretive procedure and ‘challenge researcher autism’ (Wengraf, 2011, p.104) Researchers should select ‘gold star interviews’ for panel analysis. Panels presented with ‘chunks’ of the interview selected by researcher in ‘future blind way .’ BNIM Guide (2011, p.104) advises the use of data analysis panels are : ‘for all concerned - as a personal and professional learning experience both insightful and often funny.’

14. ‘CATHY’ Cathy is a young, white woman in her mid twenties. She is married and lives with her partner, the father of all four of her children, including twin boys. Her narrative concerns the death of her youngest child , Dylan at 8 weeks. Dylan was born premature and had been hospitalised for breathing difficulties after birth before discharge. Cathy’s interview focussed on her urge to do something that would ‘make a difference’ which contradicted her assertion that the investigation of Dylan’s death had left her believing there ‘was no framework for society.’

15. From Cathy’s Story… ‘I am someone who likes to have facts, like the MMR, I researched the MMR before it happened and I knew which treatment I wanted because I believe in being proactive and having facts. I don’t go into things blindly but this time I just sort of sat whilst everything was taken away from me. I wish that the Doctor had been able to talk to me first and that Doctors were taught to deal with bereaved parents. You lose all control and you are not who you are so I was really passive and to see Dylan and to not know if this was the moment he was going to die, was really hard. …… …When he did actually die it was really bad. They pulled the curtains round and I was thinking that perhaps I watch too much telly because there you’re taken off into a room and left in a bit of privacy. When Dylan died there was a baby next to us on a ventilator who we knew was better than Dylan because his arms and legs were moving. Dylan was just a body and then they turn him off and you know that you’re watching your son die. And there’s a separate self that’s watching you watching your son die and therefore that part of me was aware that there were nurses going about their business in the curtain next to me, walking past and then the other part of me is just watching him die and I thought this is his dignity. He is dying in a curtained hospital cubicle.’

16. CATHY’S PANEL ‘This is an aggressive story’ ‘She is not behaving as a bereaved mother should’ ‘I am really struggling with this belligerent woman’ ‘A rehearsed interview’… ‘A lack of emotion’… ‘She is never off the stage.’ ‘Not the story I expected to hear.’ One panel member later reported feeling ‘chronically polluted’ by ‘picking over’ Cathy’s words…not ‘funny.’

17. DISSEMINATION

18. AND FINALLY…… ‘What’s it like to do Research you can’t talk about?’

19. Claire’s Research…

20. Perspectives of Lesbian Asylum Seekers Doctoral Study How women reflect upon their experiences of seeking asylum in the UK All women had fled persecution because of their same sex experiences/identity and sought international protection in the UK All women had experienced physical and/or sexual violence

21. Legal Context Article 1 (a) of the 1951 refugee convention states that a refugee is a person who: “Owing to well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group or political opinion, is outside the country of his nationality and is unable or, owing to such fear, is unwilling to avail himself of the protection of that country;”

22. The Asylum Process Complex legal process Subject to various restrictions Dispersal Detention Work Monitoring Financial

23. The UK Asylum Process Applicationforasylum ScreeningInterview SubstantiveInterview Decision Status granted Refusal Statusgranted Appeal Refusal Removalorvoluntaryreturn

24. Methodology Telling Sexual Stories, (Plummer 1995) Background working within NGO refugee/asylum sector Use of gatekeepers – access to support groups Pilot interviews Three repeat interviews The Sample: 11 women from Uganda, Nigeria, The Gambia, Jamaica, Pakistan & Saudi Arabia Creating a safe space, tools, participatory approaches

25. Analysis Thematic Voice-Centred Relational Method 1) Plot, Chronological Narrative 2) The voice of the I & I Poems 3) Personal and Professional Relationships 4) Social, Cultural and Legal Context

26. Insider/Outsider Complex & Fluid – areas of differences and commonality Open to interpretation Motivations I feel comfortable talking to you (…) so thank you (…) it needs to be documented (…) it’s good for me to give you my time and talk to you, to help, this might help somebody else one day to (…) it’s good that you know what happened to me, to do something good with it, I’m pleased I did it. Penny, Jamaica.

27. Researcher Subjectivity and Emotionality My role as a researcher – Boundaries- Expectations Listening to accounts of abuse, rape, torture, persecution – reflect on impact Important to recognise & acknowledge own emotions – throughout research Stanko (1997) ‘harbouring anger, frustration, fear, and pain’ Difficulties and advantages Gilgun (2008) ‘Connected knowing’

28. Dissemination Unexpected responses: “Depressing” “How do you do it” “Too emotional” “Do you think they’re ‘genuine’”? Audience views on the participants/impact on researcher

29. Some themes for discussion…please add your own…. Researcher positioning: What are the benefits/ pitfalls of including personal information within research?....for researchers? For potential audiences or beneficiaries? For knowledge construction? Are there forms of research ‘you cant talk about?’ Is some knowledge simply unsuitable/untellable in research terms? Is that always the case? How might that be changed? Does including the personal in research ‘muddy the academic waters’ and render the research less rigorous/reliable? Should research and personal stories be kept far apart? Or is there a place for this form of ‘personal telling?’

30. Thank you for listening and discussing….. Mail to: Denise Turner: D.M.Turner@sussex.ac.uk Claire Bennett: C.M.Bennett@Soton.ac.uk