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.

Writing is one thing, speaking a whole other.

Writing is one thing, speaking a whole other.

There is what is billed as a ‘true story open mic night’ run at The Storey Institute in Lancaster. It invites people with ‘real stories to tell’ relating to a specific theme each month to speak them to anyone who attends the session. Last month, the theme was ‘Love’. My Mother participated. She had written a wonderful piece about love from her view after the loss of my brother (her son), and it was incredibly moving. She claimed to have made a fool of herself, crying during the reading, but here’s the thing – she said itout loud….to a bunch of strangers. From my perspective there are insufficient words to express my admiration and respect for what she achieved in telling her story; it was a remarkably courageous thing to do.

And here’s another thing. I have not yet done the same. Public speaking incorporating the loss of my brother has not yet featured, but I know it is coming. Writing is one thing – speaking is a whole other.

I have spoken at various conferences on many different subject matters. Experiences everywhere from Australia, to Lithuania, to London should have really cemented my confidence regarding speaking about research at small symposia and large multi-panel conferences by now. So, earlier in March this year, not thinking much about it, I forwarded an abstract for a Postgraduate Conference to be held in Manchester. Never mind the lack of primary data to discuss – the call for papers stated it welcomed ‘work in progress’, and the event theme is one of those that just ‘speaks’ to my interest. My proposal has been accepted and I’m due to present in June.

But in talking with my mother after her speech, I’ve suddenly realised, for all my PhD1 and Post-doc experiences, this time it most certainly is different. I’m pleased at the acceptance, but that does not annihilate the fear. It’s ‘a while’ since my last presentation at an event, but that’s not the issue. What is is the personal attachment I have to the topic. It is one thing to think through what you might say in your mind, or practice to yourself; it is quite another to talk about the suicide of your brother in the presence of other academic researchers. Will I be too emotional? Will I get overly protective/defensive of details? Will I be able to conduct myself professionally given the attachment? I’d like to give myself the benefit of the doubt with regard to the answers to these questions, but you can’t always anticipate all. This research topic, in a new discipline and chosen by me (not given in the form of attachments to other academic projects), is much more powerful and important than previous endeavours.

So here’s how I intend to approach this. I’m going back to the very basic of basics, PhD 101. I will approach this as though it is a very first post-grad speaking experience. I shall embrace the fear and the challenge. I am not supposed to be PhD level yet, (as, as we all know, a doctorate is about the journey to PhD, not starting at graduation point…), and the other delegates are to be viewed as (possibly equally apprehensive?) peers, not assessors. This is an opportunity for rehearsal, to help in the re-invention of my approach to academic speaking, to test how I can and want to talk about the personal and the academic in a balanced manner, in a new try-out ground. Looking at it all this way is far more helpful…I think.

Literature Review, meet Personal Knowledge…

Literature Review, meet Personal Knowledge…

Perhaps the key, primary stress of the first year of doctoral study is about ‘literature reviewing’. “I’m working on my literature review” is the only identical phrase I’ve heard from peers across all subject areas, before they head off into their various quantitative or qualitative or mixed-method data-gathering phases. Whilst research topics may have initial basis in a person’s sphere of interest, it is the literature review that contextualises that interest, ‘surveying the land’ as it were, identifying the thematic areas informing the research question(s) and the gap(s) the researcher intends to fill, crucially, overall, justifying their research question. My question is, where the researcher has personal experience of the topic under review, to what extent can their personal knowledge add to the literature review, and thus contribute to a justification of the research question(s)?

Mother’s Day 2017 just passed (in the UK). Nothing remarkably unusual about that, given its ‘annual celebration’ status. Yet, it is not a universally loved day. There are those affected by poor familial relationships and/or loss for whom the day is highly emotional in a more negative manner. For those bereaved by suicide, the day can be immensely upsetting, with those who have lost a child or a mother no less than suffering and enduring the day. It can also, perhaps a bit unexpectedly to those not affected, be a highly problematic day for left-behind siblings; a day of anxiety revolving around feeling helpless in the face of their mother’s pain, trying to work out how to mark the day in a way or with a gift that both honours their lost sibling but does not increase upset. It can be a mine-field of a day in terms of the emotional state of siblings, who may feel a need to back-seat themselves, as the perception is it is not their place to say anything or show their own grief on a day specifically referring to mothers.

From a researcher’s perspective, the day is clearly significant in gaining insight into the effects of sibling suicide-loss – it would be both important and relevant to include a question on the interview schedule about what this day means to them personally. (There are also methodological implications, i.e. researcher decision-making regarding when might be essential to avoid in terms of interview dates, to respect that this day can be a major problem emotionally.) Yet, how to highlight this in the ‘literature review’? There is a woman I respect greatly, who heads a suicide bereavement and prevention charity, who describes herself as a ‘T-shirt-wearer’. She uses this term in public addresses and talks that she gives to many, many varieties of audiences. It gives her authority. Yet, I can’t help having the sense that this is not the same case within academic endeavour. I do have the impression that drawing on personal knowledge does not carry the same weight, and needs further (published) justification. The issue, then, becomes where are ideas that inform the research allowed to come from in academia? I know Mother’s Day is an issue for some siblings bereaved by suicide, and I know there are ripple implications for the emotions and actions on Father’s Day later in the year, but I don’t have literature to aid me in that discussion* – does that cause problems in including this aspect and its associated issues in the contextual text for my thesis? I don’t yet have the answer to this question, but I will be aiming to make a case for ‘personal knowledge inclusion’ by the time of literature-review-final-draft….

*(And if anyone does have literature tips/names on this aspect, please do get in touch!)