Embedded Files
which one can ever be prepared for such work. She also adds that debriefing in particular can have implications for participants’ anonymity and confidentiality, and that such ‘off-loading’ opportunities are often managed in an ad hoc manner (whilst many authors attest to the need for more formalised arrangements). Therefore, in the spirit of cultivating a community of support, some scholars have called for greater transparency in research accounts and a more nuanced understanding of how the researcher’s own emotions become an integral part of analytical processes and knowledge production (Valentine, 2007; Woodthorpe, 2007; Rolls and Relf, 2006, see also Brennan and Letherby in this special issue), as well as inform their ethical sensibilities (Boden et al., 2016). They argue for less filtering out of the researcher self (Valentine, 2007) and to make personal experience a central tenet in reporting research; or as Visser (2016) has put it, ‘to take “the emotional” out of the margins’ of our project outputs (p.6). Some of the issues these writers discuss have clear resonance with more generic publications about the emotional nature of conducting sensitive (qualitative) research on a range of topics, where effects on the researcher and the importance of reflexivity are now Mortality Special Issue Vol 22 (2) May 2017 5 more readily acknowledged (Dickson-Swift, James, Kippen and Liamputtong, 2009; Rager, 2005; Johnson and Clarke, 2003). However, in the aforementioned accounts a number of issues that relate particularly to death studies have been identified. As Woodthorpe (2011) has argued, ‘death is more than’ a sensitive subject – ‘[e]veryone is an ‘insider’ when it comes to death’ due to its ‘universal reach’ (p.100). Thus unlike when researching many other ‘sensitive issues’ such as domestic abuse or criminality, death researchers will be attending to matters they too shall experience personally at some point in their lives (Rowling, 1999) and so encounter an inevitable blurring of the perceived or intended boundaries between researcher and self (Woodthorpe, 2011). Their work can resonate with personal losses and exacerbate feelings of grief, and also prompt pertinent questions about professional roles and how researchers ‘should’ feel when their participants die (Visser, 2016) – including deliberations about ‘appropriate’ courses of action to take with implications for researchers and ethics committees (e.g. sending condolence cards, see Bowtell et al., 2013). Researching end of life issues can also provoke more general anxieties about mortality and the ‘fragility of life’ (McKenzie et al., 2016), such as anticipating the death of loved ones (Woodthorpe, 2007) as well as feelings of despondency (Lawton, 2000) and helplessness (see Burles in this special issue). Some suggest that less experienced (Woodthorpe, 2009) and non-clinically trained researchers (McKenzie et al., 2016) in particular, may experience negative and challenging feelings. Moreover, McKenzie et al., (2016) warn not to focus exclusively on support for researchers involved in interview-type encounters, for indirect engagement with ‘participants’ – such as when examining documents, case files and clinical notes – can also expose researchers to difficult, stressful and emotional content (see also Fincham, Scourfield and Langer, 2008 and Scott Bray in this special issue). Mortality Special Issue Vol 22 (2) May 2017 6 Given the aforementioned issues, it is significant that Kendall et al., (2007) report that research managers in end-of-life care are concerned about factors that shape research environments – specifically the lack of career structure for researchers – and make it difficult to retain skilled personnel that are most appropriately equipped to work in this complex field. Indeed, researchers working in palliative and end-of-life care have drawn attention to particular challenges that they face when undertaking research which involves dying people (Gysels et al., 2013; Seymour et al., 2005). Although more candid insight is still needed, it seems that relatively, this sub-field of death-related research has a more established dialogue regarding methodological issues (for instance, Addington-Hall, Bruera, Higginson and Payne’s, 2007 volume devoted to methods)i . In particular end-of-life care researchers have deliberated whether it is ‘fair’ to ask dying people to take part in research (Barnett, 2001) - including children and young people (Downing, 2016) – considering the potential for this to be burdensome (Milne and Lloyd, 2007). In doing so they have also problematised how participants are defined by those outside of ‘the field’ – for example, ethics committees preasserting that end-of-life care or bereavement research is ‘sensitive’ and that participants are ‘particularly vulnerable’ (Witham, Beddow and Haigh, 2013; Addington-Hall, 2002). Patently, research with people near the end of life (and not just those receiving palliative care) is characterised by complexity due to negotiating unpredictable illness trajectories, a challenge which we have both experienced first-hand in our own work with people who are considered to be dying. It requires an inherent need for methodological flexibility to deal with uncertainty – especially issues related to the limited time for recruitment, and issues with attrition due to (potential) participants dying, and alternative
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