Paper One: Academia, Emotion and ‘Lived-Experience Research’

Paper One: Academia, Emotion and ‘Lived-Experience Research’

I had hoped to make life a little easier and just post a video of my recent conference presentation. Unfortunately, being out of practice at this style of public speaking, I misjudged content length and ran out of time resulting in this:

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When you get told to stop mid-point and prior to the big finish…

Argh. So, instead, I’m publishing the content below…..

The ‘Martin Effect’: reflections on ’emotional labor’ facets in qualitative suicide bereavement research.

Academia and ‘emotion’

The Academy has traditionally had a problem with emotion. The argument has been framed in a way that determines ‘visible emotion’ as causing lost legitimacy (of researcher and research) (Blackman 2007, cited in Jamieson, L., et.al. 2014: 2), primarily because “sharing personal stories can be seen as being self-centred and an act of ‘navel-gazing’” (Visser, 2016: 2). Essentially, in traditional circles (those adhering to the established notions of ‘scientific’ – or what constitutes ‘scientific’ – research), emotion has generally been perceived as not just problematic, but as something to be almost feared (and therefore avoided). As a result, researchers on the whole have learned (and to some extent still learn) to mould and manage feelings and associated actions to toe the non-emotion-line of academic preference.

The knock-on effect of “This holding of emotion” (Dickson-Swift et.al. 2009: 66) has been that researchers have often neglected the self. The implication that personal connection to research can instantly challenge the degree to which researchers can claim both themselves and their work are ‘professional’ (Kleinman and Copp in Dickson-Swift et al., 2009: 63) has in turn encouraged the moulding (if not outright suppression) of researcher emotion-work attached to projects academic in nature. Researchers, including social scientists, remain “‘trained [own emphasis] to suppress emotions’ (Bellas, 1999: 104)” (in Dickson-Swift et al., 2009: 66); and it is rare that such rules and ‘instructions’ of behaviour/attitude are questioned at the novice level. Yet, as Highet points out, these “Theoretical debates about ‘neutrality’ and ‘objectivity’, ‘engagement’ and ‘social action’ do not prepare you for how it feels [own emphasis]” (cited Jamieson, L., et.al. 2014: 86)

Emotion enters all research. Particularly within the social sciences, personal experiences have a role in shaping research in that we all do come to research with preconceptions, indeed biases. Thus, as Grant and Zeeman argue, accusing researchers of self-indulgence if the personal is visible in research is only to assume that the researcher is “autonomous and culturally, dialogically and relationally disconnected from other people” (2012: 2), which is not, and cannot be, the reality. As Barbalet (2002) has pointed out,

“A well-developed appreciation of emotions is absolutely essential…because no action can occur in a society without emotional involvement.” (Barbalet, 2002: 2)

The question should become, then, not about whether or not emotion should come into play, but about how emotion that is naturally there is to be managed.

‘Expert by Experience’ – ‘Lived-Experience Researchers’

I am conducting my research because of ‘lived experience’ – losing my brother and only sibling, Martin, to suicide, when I was 30 and he was 27, led me back into the world of academic research, to explore and record the experiences of other adult siblings after this form of loss. I came into the project with a proposal that followed the traditional focus on topic-content and the participants of the project. At the outset, I thought of only what I wanted to compile and write after talking to other people. I failed to appreciate my role and position in the research, as someone directly affected by the subject under examination.

Perhaps the assumption was ‘experience makes this research workable’ – essentially, I viewed my experience as an advantage, as crude as that sounds, in that it implied “ease of access to the field…expediency of building rapport; nuanced and responsible data collection, taking into consideration community norms and values; and richness in the interpretation of the data in light of deep knowledge” (Ross, 2017: 2). However, delving closer into other (though not bountiful) accounts of ‘lived-experience researchers’, and drawing on some of my initial emotions, it has become clear that multiple obstacles/potential trip-ups do have to be navigated.

Firstly, there is no such thing as a ‘Total Insider’ – there are only insiders of own experience. I remain an outsider to others’ grief experiences, no matter the common factor of suicidal death. Secondly, self-disclosure can also distance (Pezalla et al., 2012: 167) as well as unite – Finlay for instance describes this issue as being about a “threatening [own emphasis] path of personal disclosure”, whereby “the researcher treads a cliff edge where it is all too easy to fall into an infinite regress of excessive self-analysis at the expense of focusing on the research participants” (2002: 532). Recognition of this leads to, thirdly, the highlighting of other emotional elements: for instance, there is much guilt that brings forward questions – am I exploiting the death of my own brother? Am I exploiting others’ pain? Will I result in providing an example of how, to cite Kvale and Brinkmann (2009), a lived-experience researcher’s “knowledge of how to create rapport and get through a participant’s defences may serve as a ‘Trojan Horse’ to get inside areas of a person’s life where they were not invited”? (75) None of these are pleasant to think on, yet they inevitably arise, demanding consideration.

Other researchers in a similar position to mine have cited emotional tolls manifesting in regret, feeling powerless to aid their respondents (Highet cited in Jamieson, L., et.al. 2014: 87) and high-levels of “frustration, physical and emotional exhaustion” (Ryan cited in Silverman, 2016: 41), due to the cumulative nature of the emotional impact of the research (Jackson et al. cited in Jamieson, L., et.al. 2014: 139-40). Indeed, the analytical and dissemination stages of a research endeavour can be just as taxing as the data collection phase. For instance, there are accounts of (re)traumatisation developing during qualitative data analysis (Frambach, 2015: 957), and it has been described that researchers can find it hard to make decisions as to what to keep in and leave out – all can appear important, leaving the researcher anxious, not wanting to misrepresent or exclude. This can also filter down into spoken presentations, even to “needing to manage emotions while talking.” (Jackson et al. in Jamieson, L., et.al. 2014: 140). Overall, there is strong potential for researchers with lived-experience to reach “saturation point”, leaving them “feeling ‘emotionally drained’” (McKenzie et al., 2016: 6).

Strategies

Turning specifically, then, to my own project, realisation of the need to think about personal strategies to manage my emotional connectedness to the project began early on. Reflection and reflexivity are often put forward as crucial in an academic sense – as Finlay argues, “Ideally, the process of reflection and reflexive analysis should start from the moment the research is conceived.” (Finlay, 2002: 536) These aspects are certainly crucial to my study, but it also must be said that reflection and reflexion are not the be all and end all – indeed Pillow (2003) for instance, “problematizes the notion that self-reflexivity ‘provides a cure for the problem’” (cited in Ross, 2017: 3) – engaging in this R&R does not solve all the issues pertaining to lived-experience researchers, and clear articulation regarding specific decisions/strategies is also required.

Some of the key areas for my work are as thus follows:

1.My ‘Insider knowledge’ is to be recognised as useful for logistical decision-making, and is not something that always needs justifying through connection to already-published literature, particularly with regards to research questions. I will engage actively in “using emic understanding of the studied phenomenon to develop appropriate interview questions” (LaSala in Meezan and Martin 2003: 19). I know, for example, that loss by suicide can affect career choices, employment relationships etc.; I know that loss by suicide can encourage previously unconvinced people to seek out mediums and conversations with the dead – so why not use these insights to form questions? As LaSala points out,

“Qualitative researchers who are members of the groups or communities they study have a unique ability not only to elicit emic perspectives, but also to understand their importance…personal familiarity with issues affecting their respondents’ lives may enable them to formulate research questions” (LaSala in Meezan and Martin 2003: 17).

Furthermore, in terms of practicalities, I know the effect that ‘celebratory’ days (Christmas, Easter, even Hallowe’en and Mother’s/Father’s Days) (Omerov et al., 2014: 3412) can have on adult siblings specifically, so I will draw on that to plan interview timings. I know that restricting the length of time for an interview may be counter-productive, given that many siblings are in their lives often not afforded space to talk – I will therefore enter the interview scenario “prepared to listen for as long a time as…needed. (Dyregrov, 2004)” (Omerov et al., 2014: 3412). What will simply be important will be to explicitly outline and acknowledge where my ‘insider knowledge’ has been utilised, and how it has been incorporated.

2. ‘Researcher-participant’ friendships. As a suicide bereaved person, meeting those who ‘get it’ are worth their weight in gold. But then I am also a researcher. The usual academic advice is to ‘avoid dual relationships’ (LaSala in Meezan and Martin, 2003: 22) – they are often considered too blurry to be beneficial. Yet there is research to show that being open about the nature of the relationship with the interviewees can allow a form of friendship and research-relationship to co-exist relatively un-problematically. For instance, Ross has described how:

“I addressed them directly… ‘I feel the same way, about how great it is to be in touch with someone going through such a similar experience…Because of that I have to tell you I’m struggling a bit with figuring out what kind of relationship with you is ok considering I’m the principal researcher of a study you’re participating in, do you know what I mean? Just ethically in terms of making sure that you do not feel coerced to continue to participate, do not share information with the study you wouldn’t otherwise necessarily choose to share and so forth because of a relationship between us. Anyway, I just wanted to let you know that it’s on my mind, that I’m juggling these roles, so that if you feel any distance on my part, you will know that’s where it is coming from, and definitely not from a lack of interest or connection.’” (Ross, 2017: 6-7)

This to me emphasises that ‘mutual agreement’ here is more than helpful. Being emotionally honest and open, making the tensions visible is important and, I believe, a best way to demonstrate respect for participants, allowing successful handling of relationships when the research topic is entangled with the personal life of the researcher.

3. Closely linked to this aspect is the issue of self-disclosure (Visser, 2016: 3). As a person affected by suicide loss, I can say that what you reveal to whom can depend very much even upon the day of the week, never-mind anything else. And sometimes things are said on the spur of the moment, just because a pertinent memory pops up, for example. For research purposes then, extra concentration needs to be given to thinking about the questions: a) what would I want to share/feel comfortable in sharing? and b) under what circumstances would I speak my memories/experiences? The care I wish to take is to not speak my thoughts in a manner that can be taken as advice – I am not a therapist; I am merely a peer. Therefore, I have decided to stick to factually-based comments, rather than offering interpretations of my own experience. It may also be beneficial with regards to self-disclosure to be interviewed using my own research questions/interview schedule, as a means of thinking about what information I would share if I were a respondent, (to help reduce possible impulses to speak within actual interviews (when I should concentrate on asking questions), and also to perhaps determine a protocol of own-information open for disclosure, should respondents seek out such information). I will also not offer, but only respond, if asked. In this respect, I aim to entirely engage with Finlay’s suggestion that “the self is exploited only while to do so remains purposeful” (Finlay, 2002: 542).

4. It is also important to make explicit reference to the acceptance and appreciation of physical emotion as a feature of my decision-making. ‘Outward signs of emotion’ are largely overlooked in discussions regarding research interactions, although there are comments to be found where researchers have “reported holding on to emotion” (Dickson-Swift et al., 2009: 67) rather than displaying bodily reaction in interview contexts. This comes back to the idea that academic value rests on an idea of “being professional…involve[ing] not showing any outward signs of emotion.” (Dickson-Swift et al., 2009: 69) I highly anticipate that at some stage I will encounter a participant story that will prompt an emotional response – it would thus affect my professionalism and sense of stress as an interviewer to not allow crying, and therefore I will be explicitly mentioning crying as part of my methodological (and ethical) decision-making.

5. And lastly, self-care will be prioritised and built into my research design. Essentially, I “acknowledge[…] feelings as part of the research process” (Dickson-Swift et al., 2009: 62), as a means of self-empowerment. I have placed myself in the position of researching this topic; but I also have a duty to look after myself. The argument may be that “Universities (and research centres) have a duty of care to researchers” (Dickson-Swift et al., 2009: 74), but it is also the case that researchers should seek to care for themselves and express this so, without trepidation. As Highet comments, “We must be prepared to draw our own lines as we navigate our way through our work” (cited in Jamieson, L., et.al. 2014: 87). As this is a work in process, I’m not entirely sure what form this self-care will take, but I’m working on, and articulating the need for, it!

Conclusion

How then to sum up this very brief consideration of ‘emotion labor’ with regards to my researcher activity in examining that of which I have lived-experience? I would stress that emotional management is as much a research skill as any other, deserving of respect and recognition, especially when direct experience of the research topic is at the heart of an endeavour. In my (part time) case, I am currently a long way off fieldwork, yet focused consideration of the emotional connectedness and facets to my work have already come to the fore. I obviously do not know how I will react in interview situations, in relation to data analysis etc., but the point is to recognise, to anticipate possible impacts in as much detail as possible, in order to identify or design strategies to manage and combat should the need arise. Within academia the impression upon me is very much that “connections between…research and…private lives are not often publicly acknowledged because ‘the norms of scholarship do not require that researchers bare their souls, only their procedures’ (Lofland and Lofland, 1995)” (cited in Primeau, 2003: 11), so then my aim is to try and openly integrate the private life into the procedural process valued within academic communities. That, I hope, is a route to trust in me as a researcher, and in the work I produce.

 

Reference List:

Abell, J., Locke, A., Conder, S., Gibson, S. and Stevenson, C. (2006). ‘Trying similarity, doing difference: the role of interviewer self-disclosure in interview talk with young people’ in Qualitative Research, Vol. 6., No. 2., pp. 221-244.

Barbalet, J. (Ed). (2002). Emotions and Sociology. Blackwell Publishing.

Carmack, H.J. and DeGroot, J.M. (2014). ‘Exploiting Loss? ethical considerations, boundaries, and opportunities for the study of death and grief online’ in OMEGA, Vol. 68, No. 4, pp. 315-335.

Dickson-Swift, V., James, E.L., and Liamputtong, P. (2008). Undertaking Sensitive Research in the Health and Social Sciences: managing boundaries, emotions and risks. Cambridge.

Dickson-Swift, V., James, E.L., Kippen, S., and Liamputtong, P. (2009). ‘Researching sensitive topics: qualitative research as emotion work’ in Qualitative Research, Vol.9, No.1, pp.61-79.

Finlay, L. (2002). ‘ “Outing” the Researcher: The Provenance, Process and Practice of Reflexivity’ in Qualitative Health Research, Vol.12., No.2, pp.531-545.

Frambach, J.M. (2015). ‘Balancing Vulnerability and Narcissism: who dares to be an autoethnographer?’ in Medical Education, Vol. 49., pp. 952-958.

Grant, A.J., and Zeeman, L. (2012). ‘Whose Story Is It? An Autoethnography Concerning Narrative Identity’ in The Qualitative Report, Vol. 17., Article 72, pp.1-12.

Jamieson, L., Simpson, R., and Lewis, R. (2014). Researching Families and Relationships: Reflections on Process. Palgrave Macmillan.

Kvale, S. and Brinkmann, S. (2009). InterViews: Learning the Craft of Qualitative Research Interviewing. Sage.

McKenzie, S.K., Li, C., Jenkin, G. and Collings, S. (2016). ‘Ethical Considerations in Sensitive Suicide Research Reliant on Non-Clinical Researchers’ in Research Ethics, pp. 1-11.

Meezan, W. and Martin, J.I. (2003). Research Methods with Gay, Lesbian, Bisexual, and Transgender Populations. Routledge.

Omerov, P., Steineck, G., Dyregrov, K., Runeson, B. and Nyberg, V. (2014). ‘The Ethics of Doing Nothing. Suicide-bereavement and research: ethical and methodological considerations’ in Psychological Medicine, 44, pp.3409-3420.

Pezalla, A.E., Pettigrew, J. and Miller Day, M. (2012). ‘Researching the Researcher-as-Instrument: an exercise in interviewer self-reflexivity’ in Qualitative Research. Vol.12, No.2, pp.165-85.’

Primeau, L.A. (2003). ‘Reflections on Self in Qualitative Research: Stories of Family’ in The American Journal of Occupational Therapy, Vol.57., No.1. pp.9-16.

Ross, L.E. (2017). ‘An account from the inside: examining the emotional impact of qualitative research through the lens of ‘Insider’ research’ in Qualitative Psychology, pp.1-12.

Visser, R.C. (2016) ‘‘Doing Death’: reflecting on the researcher’s subjectivity and emotions’ in Death Studies, pp.1-8.

Suicide Bereavement and 13 Reasons Why – Reflections

Suicide Bereavement and 13 Reasons Why – Reflections

*contains programme spoilers

 Pre-viewing background

I first became aware of 13 Reasons Why in 2014. I was in the midst of motherhood year one, and attempting to locate any story-book that portrayed sibling suicide loss that I could read during nap times. I ventured into my local bookstore and asked for advice on any fiction books that dealt with the subject, and 13 Reasons Why was the first to come up. I discounted it because a) it was a ‘young adult’ text (and I did not want to know about teen experiences being not one), b) it is set in America (suicide may be a global issue but cultural contexts and references do come into play and matter), and c) it appeared from the blurb that the bereavement focus was on friends, not the relationship I wanted to read about.

Fast forward to 2017, and the television adaptation has received a lot of coverage, reportage that someone personally touched by suicide would be hard pressed to avoid. But for all the focus on programme-associated suicide prevention concerns, the ‘glamorising’ of suicide, the ‘effects’ and potential for contagion etc., although entirely pertinent and crucial issues, they do not (for me) encompass the entire point. What about the already-suicide-bereaved? Might we not also need a viewing-warning regarding potential trigger elements, given it is near impossible to not recall our own experiences when the s-word is mentioned? Given that Hannah Baker is dead from the outset of the series, I would argue the story is as much about the immense sprawling and ripple after-effects of a suicide, and the variety of impacts experienced by people affected, as it is about examining the ‘reasons why’ someone would take their life (something which is impossible to generalise upon in the first place). Given also that one of Hannah’s friends goes on to attempt to take his life towards the end of the series, I put forward that paying attention to the handling of bereavement after suicide needs consideration.

Making the decision to watch

It is difficult to describe the draw to such a programme when you have lived experience – why would you even want to expose yourself to it? I am not the show’s intended audience at all, but my experience of suicide drew me to it – moth to flame. In many respects, I did fear this programme. I speak for myself, but I’m sure I’m not the only suicide-bereaved person to have thought ‘I was a reason for what they did’. I have distinct memories of sitting in a pub with two of my brother’s closest friends, not long after his death, asking and really wanting them to tell me if he had said anything that might indicate the extent to which I had been a cause. I doubt there is a suicide-bereaved person who has not expressed ‘if I hadn’t done this’, or ‘I should have done that’ at some point. The sense of responsibility, indeed culpability, can be immense, especially when there is no note (or tapes) to provide explanation. To have a programme (regardless of its fictional status) appearing to confirm that blame exists, and that a person has an ability to accuse after death, is a scary thing.

Nevertheless, I decided to watch the series, just to see how they showed the grief experiences, though not because I was seeking identification. I had (have) no wish to see my exact feelings and thoughts replicated in any dramatic text, televisual or otherwise. I think I’ve reached the point where it’s just about recognition of individuality of experience, and respect for that individuality. It’s more about just getting a sense of a validation of bereavement as generally important in suicide narratives. (Attached to the personal though, I can’t always escape the researcher hat – having also spent three years as a post-doctoral research fellow investigating actors’ constructions and performances of real lives, a part of me is simply interested in how the real is played in fictional and docudramatic representations, so this also fuelled my interest in watching this particular show.)

Post-viewing reflections

I have just finished a binge-watch of the series. I didn’t want to like it, and I’m still not sure ‘like’ is the right word, but it is undoubtedly compelling – once you’re into it, you need to watch it all. It works very well on that front, and it’s certainly impactful. The reports are in my view absolutely right in their concerns/comments referencing the graphic portrayals of rape and suicide – the latter of which is seriously distressing . It is by no means an easy watch, or one easily forgotten.

In reference to the depictions pertaining to suicide bereavement, there are a few things I’d say:

  1. I don’t know what research the actors did (or were even required to do) regarding bereavement after a suicide (I’d really like to know…), but the physicality of the grief experience does not come across at all. The tears, sadness etc. are played, but that’s just it, played (not lived) – the sense of the physical loss, especially in Hannah’s parents, felt quite inauthentic for much of the time. They are not, in my view, ‘embedded actors’ (Sutherland, 2010) – in reference to previous research I’ve conducted, I’ve argued that “Having that ability to understand entrenched emotions enables the actors to develop a convincing physical performance” (Sutherland, 2010: 277), and this is missing in 13 Reasons Why. Perhaps this could be attributed to it being a fictional piece (not docudrama, although dealing with a ‘real life’ issue), or to it requiring screen-acting techniques (Sutherland, 2010) rather than those necessary for live, theatre environments. Whatever the reason, in general this did hinder the level to which I was convinced by the roles.
  2. That said, the mechanics, as it were, of the bereavement experience worked well. The depictions of Clay’s episodes of distraction/daydreaming, disorientation, and experiences of (sometimes violent) mirages, nightmares and flashbacks induced by geographical locations were, I felt, pretty strong. Similarly, this character’s portrayal of anger was impressive, and his being seen to want to listen to the tapes, then not, then wanting to listen again was well portrayed. There are certainly times when you don’t want ‘The Suicide’ to be central, that you want to ‘forget it’ and ‘be normal’; then there are times when it demands total focus. That repeated ebbing and flowing is often not appreciated or shown; emphasis is usually on grieving then moving on, which I don’t believe is the nature of suicide bereavement.
  3. It sounds most odd to say, but I was pleased to see the stigma of suicide loss acknowledged. Other people’s (sometimes negative) reactions to the suicide bereaved themselves can be significant to the grieving process. Hannah’s parents’ experience of this, although brief, is a very important inclusion in the series. Yet at the same time, there remains a problem in that Hannah is her death – Hannah=Suicide throughout the whole series, which is something that anyone with lived experience also has to deal with. I have come to think that part of the grieving process is very much about trying to locate the person and the relationship held with them outside of the manner of their death, and it takes a huge amount of time, effort and energy to ‘remember the good parts’. In many respects, this programme seems to suggest this can’t be achieved.
  4. There are potent lines in the script that really resonate with the experience as I know it: “She had a face and a name”; “Everybody wants to talk. Nobody wants to do anything”; “I’d not thought about dying until this.”And there are little exchanges that have impact, ones which perhaps would not appear significant to someone who hasn’t experienced suicide loss. For instance, in conversation with a stranger, Olivia (Hannah’s mother) talks about Hannah in the present tense after her death: “I have a daughter. She is 17”. Her husband does not correct her and she later says, “I did not lie to that woman”. This was strikingly familiar – deciding what to tell and to whom, especially when meeting new people, is a core part of living with suicide loss.
  5. There is often an assumption that people bereaved by suicide must instantly be counselled by professionals. On many occasions this may be true, however I do think that what matters greatly is having the opportunity to talk to people who ‘just get it’, and who also don’t judge. Never underestimate the importance of an environment in which ‘normal conversation’ and talk of suicide can coexist, indeed are both equally welcome, the latter not shutting down the former. This is why peer support (Barlow et al,. 2010) can be so helpful in the process of navigating suicide bereavement, and this is something that is clearly shown, (and shown well), in 13 Reasons Why – Tony’s understanding, concern for and support of Clay is a wonderful feature of the show and the conversations between them are some of the most moving, (arguably real). We need more Tonys.
  6. The word ‘choice’ is used a great deal in reference to Hannah’s actions; she ‘made her decision’. To me, this simply does not adequately deal with the complexity of the issues, particularly in reference to the nature of mental ill health. From a bereavement perspective, this word is also problematic, as it reinforces the assumption that there are absolute reasons to be found to explain ‘the choice made’. It is interesting that the show presents obvious criticism of ‘the counsellor’, what he didn’t do, really pointing to a losing of faith in ‘mental health professionals’, which some suicide-bereaved people can experience (and have reported) (Pettersen et al. 2015).

In sum….

I would like to say I have a conclusion about the depictions of suicide bereavement in 13 Reasons Why. I’m still negotiating on that front. I wouldn’t label it helpful to those who have personal experience, and I think my initial thoughts on the book were correct – firstly, I found myself responding a little more to ‘the parents’ than to ‘the friends’ because of, principally, life stage. Age certainly matters, as do the priorities one has at different points in life. Secondly, the fiction-story (unreal) aspect of this production was certainly emphasised by the unfamiliar-to-me American context. Thirdly, I would have liked a bit more depth to the bereavement performances, but then again, as I say, it is a fictional show with different openly-expressed priorities, so what can you really expect? Bereavement is simply a facilitating aspect for the overall narrative, connected but not central, as per the outline provided by Netflix. But what the series does show well is the utter mess of the after-ward of a suicide for those left behind. That no-one is labelled a ‘survivor of suicide’ (the common term for those bereaved) at any point in the series worked well for me, emphasising just how big the impact of one person taking their own life can be.

 

If you have been affected by anything discussed here (or the television programme itself), please seek support. Suggested resources in the UK include: 

The Samaritans

Survivors of Bereavement By Suicide

If U Care Share Foundation

Papyrus

 

Bereavement as part of the ‘Mental Health Conversation’

Bereavement as part of the ‘Mental Health Conversation’

Whenever the London Marathon comes around, I always think how lovely it would be to participate. I’d love to run it. And then I remember I can’t run. My PE teacher at school pointed that out, and nothing has changed over the twenty-ish years since. Still, would be nice if…

I followed the build up to this year’s marathon with interest, given its billing as the inaugural ‘mental health marathon’. The coverage garnered by Princes William and Harry and Catherine via their Heads Together charity has really done a lot for the ‘mental health conversation’. The significance for me lies in the attention drawn specifically to bereavement. The references made to loss in the press coverage have highlighted the seriousness of bereavement within the mental health conversation – grief is not a ‘mental health problem’ but it can be a major precursor to difficulties. EVERYone can, and most likely will, be affected by a bereavement during their life time, and that is why it is so important to see loss as a significant part of the mental health conversation more broadly.

There is a myth regarding the effect of suicide, that it runs in families. Research points to the falsehood of this; however, research does show there is increased risk of suicide after exposure to this form of loss. A person bereaved by suicide experiences the pain of separation, the grief and sadness, but they also frequently endure additional facets such as guilt, questioning, anger, relief and/or rejection (Wertheimer, 2014). It is common for those affected by suicide to speak about a loss of identity and a sense of becoming numb, also presenting with symptoms of trauma – the flashbacks and re-livings associated with Post Traumatic Stress Disorder are common. Research shows how the multitude of emotional experiences after a suicide can contribute to a lack of self-worth, damaged self-esteem, a loss of trust in people and professionals. For instance, a study by Pettersen et al. (2015), very clearly outlined the ways in which siblings can perceive and relate to health services after a suicide:

“You get very scared….My brother tried to get help, there was none and he died. You don’t believe in them. Trust is necessary. I want to feel certain that when I call and say I need help, there will be somebody there that is willing to help me.” (2015: 326)

Fear and anxiety (Powell and Matthys, 2013: 322-3) can exist, with many “suffer[ing] from “constant feelings of approaching disaster” (Pettersen et al., 2015: 328). Significant are findings that suggest bereavement by suicide can lead to indifference to death, (“As Jennifer found out after her brother’s suicide, it was not that she actually wanted to die but more a sense that it really would not matter if she did.” (Wertheimer, 2014: 163)), and so it is not entirely surprising that suicidal feelings amongst persons bereaved by suicide are noted as being common. Thus, as Wertheimer points out, “Unravelling these complicated and sometimes conflicting feelings can be hard work for the survivor” (Wertheimer, 2014:161). The ‘legacy of suicide’ is a prevalent idea, illustrating why acknowledgement of bereavement (particularly by suicide) is so crucial as part of a more general conversation about mental health:

“one of the most striking features of suicide bereavement is the way in which [their] unbearable feelings are passed to the survivors. The ‘pyschache’ (Shneidman 1993), the shame, guilt, humiliation, anger, loneliness, angst and other emotions associated with suicidal states frequently become the survivor’s legacy….the suicide victim passes on his [her] psychological ‘skeletons’.” (Wertheimer, 2014: 218)

Thinking about all this from a personal perspective, I applaud the Princes for highlighting talking as important and normal (especially amongst men), for naming bereavement and loss as important, helping to gain increased acknowledgement for the significant life-changing experience that is losing a loved one. But what I wish more focus to fall on now is what can actively and practically be done to help bereaved people. Prince Harry didn’t want to talk and buried his emotions – I was willing and wanted to talk about my loss straight away, but there was no one to actually talk to, which also eventually led to emotion-burying. It was almost five years after the death of my brother before I met another sibling who had experienced the same and could ‘get it’. I wanted a face-to-face talking-support group, and in its place received anti-depressants – there are still no easily accessible support groups in my area of the UK. I didn’t want a telephone line or a website or counselling – I needed a physical ear, a place to vent without judgement. I specifically asked my doctor for advice on where to go, who I could talk to, and they could not help – ‘I don’t know’ was the response I received. I finally found a group (four and a half years after my loss), but still had to go through almost a ‘triage-eligibility’ phone call prior to confirmation of my place, (and, subsequently, the sessions ran for only ninety-minutes weekly over six weeks). I am lucky – I have a research personality that pushed me into seeking out, and demanding(!) help. I also have a very supportive family and network of friends. But for those who don’t, I can see the ease with which bereavement can entangle with mental health and spiral down into complicated grief, major depression, even suicide. Even if the intention and want to talk is there, the resources (charitable or otherwise) are simply not, and in many ways the bereaved are frequently left to ‘sort themselves out’. “Suicide postvention as suicide prevention” (Shneidman 1972) is a statement frequently declared as requiring attention. Linn-Gust has also argued that, “By helping the bereaved through their losses…we are breaking the legacy of suicide in families” (2010). But the actual means to act upon these ideas and the physical spaces available and accessible to allow their achievement are in reality severely limited.

I will watch with interest to see how Heads Together evolves – I hope the public consideration, acknowledgement and discussion of bereavement is not diminished (though obviously ‘mental health’ covers a myriad of conditions and situations that all require attention). I also continue to hope usable-resource-development for the bereaved, (especially, from my perspective, the bereaved by suicide), will become a priority.

 

Sources:

Pettersen, R., Omerov, P., Steineck, G., Dyregrov, A., Titelman, D., Dyregrov, K., and Nyberg, U. (2015). ‘Suicide-Bereaved Siblings’ Perception of Health Services’ in Death Studies. Vol.39, Iss.6.
Powell, K.A. and Matthys, A. (2013). ‘Effects of Suicide on Siblings Uncertainty and the Grief Process’ in Journal of Family Communication. Vol.13, Iss.4.

Wertheimer, A. (2014) A Special Scar: The Experiences of People Bereaved by Suicide. London:Routledge.

On the development of technological ‘aids’ for study purposes

On the development of technological ‘aids’ for study purposes

When engaged in my ‘Learning Developer’ role, the look of incredulity crossing students’ faces when I reveal to them that during my first undergraduate year there was no Google, no Wikipedia, that I handwrote my first essays in fountain pen (with corrector-pen aid) does make me chuckle. Such things are unthinkable to them. They simply don’t chime with current undergraduate assignment-completing processes. ‘But where did you start?’ ‘Erm…at the library….’

And now I get similar surprised expressions when admitting to having not used EndNote or NVivo for PhD1. ‘Reference Management Tools’ were only beginning to come into play at the end of my project, and the thematic analysis of interview transcripts involved highlighters, post-its and copy-pasting into what I labelled ‘quote compilation documents’, (which I proceeded to print out and attack with highlighters again). How things do change.

There are developments in student technology that I just adore. The iPad and Apple Pencil are pure bliss for note-taking, mind-mapping/planning, minute-taking etc.; the apps available are just brilliant for synchronising research materials across multiple sites, and for the carting around of copious numbers of journal articles, (with the added bonus of still being able to write on them). Essentially the appeal of the digital aids I now employ has been in there being no real need for paper/pens, and the corresponding result of less backache/shoulder-pain due to excessively-heavy bag-lugging. Mobile studying has certainly been facilitated, and this definitely works for this part-timer needing to get on with it wherever and whenever she can.

Still, there is nothing like exposure to apparently universally-applicable ‘digital helpers’ to shove your increasing age in your face. I have attended training sessions on what generally seem to be the ‘core’ packages, (or ‘university approved’ tools), where I’ve either had the light switched on, or basically crashed and burned – the former for NVivo; the latter being the case with EndNote.

Let me address the negative first. Admittedly the idea of something to help with referencing (in making it, essentially, perfect) is attractive. Indeed, perhaps such digital assistance would be good as a means to not spelling your external examiner’s name incorrectly, (as I, ahem, managed to do last time). But here’s the thing, whilst I appreciate the creation of a library/bibliographic-record aspect, and the ability to attach PDFs etc., the whole insert-citation-whilst-writing part is just cumbersome, outright frustrating, and totally distracting. My note-taking style is such that I record citations directly after any quotes or paraphrases; I do not need, nay want, to go into separate software to insert from one file to another. The inserted citations require revision anyway, especially if specific page numbers are necessary. In short, and at the risk of toddler-fying myself, I don’t like them. I do feel guilty about my view of reference manager applications – it’s one of those, ‘everyone else uses them so I should probably do that too’ sensations. Supervisors and departmental colleagues all stress I MUST use a reference manager. I have a sense that the view is my endeavour can’t possibly go completely well if I don’t get my act together here….but then the last PhD went ok without such ‘help’… So, whilst I am tinkering with Mendeley, (though more out of curiosity rather than actual work value, and because to me its interface appears more user-friendly than EndNote), overall I’d say I am still (comfortable) in the citation-dark-ages.

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NVivo, however – can’t wait to give that a shot! Genius idea. I had misgivings about its value – other PhD colleagues have told of their dislike, stating it doesn’t really actually help. It takes, they said, a long time to input data, and you still have to analyse all the data yourself, develop the nodes and codes etc. One friend reported it ‘doubled’ the amount of time she needed for analysis. But I came away from an initial training session rather cross, impatient that I won’t have data to input for about another year – (again with the inner-toddler) I wanna analyse now! Having all data in one tidy place most definitely beats the option of multiple printed-out, soft-bound, highlighted ‘quote books’ that can’t be searched easily or swiftly. So to build up knowledge, and having seen other examples of a similar process, although it may sound rather peculiar, I’m going to practice using it in building my literature review. I aim essentially to think of the literature sources as I would respondent transcripts. After all, there are multiple layers to the themes ‘grief and bereavement’ and ‘family and siblings’, which should offer scope to code and query the notes from my readings. Must just remind myself to stay focused on the content, not just get lost in playing and familiarising myself with this form of academic toy…

In Support of Magpie-ing

In Support of Magpie-ing

I have magpie tendencies. I like draw on different fields to find ‘applicable stuff’. I have, for example, be known (as a qualified dance teacher) to use my dance moves to explain English-word collocations, drawing on the physical to aid the understanding of something abstract. I like to look at the ways ideas can be applied in non-traditional ways, not simply regarding them as belonging in a fixed place. This, I think, came from one of my MA tutors, who advised starting ‘with what you know and like’ as a means to choosing my dissertation topic – at the time I had just left a job working in a small, family-run cinema in Aberystwyth. I loved that job, not just the watching of the films for free (bonus!) but the atmosphere of the place, watching people’s interactions in the theatre etc. I also loved the history side of my degree, particularly social history. I connected the two, and ended up writing a dissertation about cinema-going in Britain and Ireland, 1945-50. When it came to PhD1, I needed to think around a bit to access material – the BBC didn’t really keep brilliant records regarding comedy/light entertainment so I had to utilise a lot of interviews. And interviews for historical studies required quite a bit of justifying (in terms of the benefits of the method). Moving to post-doc, I came into contact with more disciplinary crossovers, weaving in and out of history, television studies and performance and theatre studies, again using interviews to question actors about their past performances in documentary presentations. Taking a look back over all these experiences, I cannot imagine life boxed into one discipline – a good thing, then, that I am currently researching something that crosses health, sociology, therapy etc., also benefitting from the experiences of three supervisors from very varied disciplinary backgrounds, including Anthropology, Sociology and Social Gerontology. Call it ‘interdisciplinary’, ‘multidisciplinary’, ‘cross-disciplinary’, ‘transdisciplinary’ (Pisapia et al., 2015: 660-1) or whatever, despite fears of being less-fund-able or lacking because of poor REF status next to discipline-specific publications (Pisapia, et.al., 2015: 670), ‘it’ is, as far as I am concerned, a wonderful thing. Research that crosses borders, I maintain, is logical, allows innovation and the location of new ideas, injects fresh air into the endeavour, can lead to clearer explanations, promotes collaborative working relationships (which are certainly desired in the UK’s academic environment), and most importantly is just really interesting to do.

However, I must make one comment. Where I see a problem lying is in the institutional home for such work. Whilst academics may wish to pursue ‘the interdisciplinary’, the institutional framework in which academics operate doesn’t always help. Here’s my personal evidence: I am a PART-time student, affiliated to TWO universities, operating in the medical AND humanities and social science faculties. I am also someone who happens to be a paid employee of the primary university where I simultaneously study. I do not think it unfair to say that the institution(s) are struggling a little to cope with this set of circumstances, with the administrative aspects of the doctorate causing nothing short of big headaches for all involved. Would it really be so hard to encourage a more porous, malleable approach in university administration departments as well as in the content-based zones?! Must the organizational boundaries between faculties and registries be so pronounced, when the spirit of collaboration is so actively sought, indeed encouraged, in terms of research content?!

That said, every cloud and all that…I can draw on this for my research. On 13th March 2017, I attended a talk organised by Northern Centre for Mood Disorders and Newcastle University. Shirley Smith (of the suicide bereavement and prevention charity If U Care Share Foundation) spoke at this event, highlighting the need to ‘treat people as people’ following a suicide loss, to not put them in ‘grief boxes’ requiring pre-determined modes of support. Good principles. Thus, whilst my frustrations at the bureaucracy I will undoubtedly have to contend with throughout my studies will persist, I can at least channel them more productively, reminding myself to challenge my own (as well as others’) assumptions, to move across and beyond perceived boundaries, to reinforce in my research the need to not seek to fill pre-defined boxes or confine to expected traditional boundaries or labels, to consider ‘the individual’ level and allow those who decide to be involved in the work to develop and inform definitions by describing their unique experiences and interpretations.

Reference:

Pisapia, J., Razzaq, J., and Townsend, T. (2015). ‘Fostering Interdisciplinary Research in Universities: a case study of leadership, alignment and support’ in Studies in Higher Education, 40:4, pp.658-675.