Rethinking Vulnerability and Sensitivity

Research ethics committees are very concerned with the potential vulnerability and sensitivity of research participants. So far, so laudable – but I don’t think they show their concern in particularly useful ways. Gaining formal approval from a research ethics committee is a hoop many researchers have to jump through, but then the real work of ethics begins.

For most research ethics committees, vulnerability is an attribute of some groups and not others. Groups who may be deemed to be vulnerable include children, older people, or adults with learning disabilities. These categories are specified by UKRI who oversee government-funded research in the UK. But if you look at this in more detail, it doesn’t stand up. Take children. Say a competent 14-year-old is a young carer for their single parent who lives with severe and enduring mental health problems and drinks alcohol all day. Which of those two people might be better able to give informed consent to the child taking part in research? Conversely, people are not necessarily vulnerable because they are older. President Biden is 79 and I can’t imagine him being seen as vulnerable. Learning disabilities don’t necessarily make people vulnerable either, as some of my dyslexic friends would no doubt agree.

Vulnerability is not an attribute, it is a state we all move into and out of in different ways. The start of the Covid-19 pandemic made this abundantly clear. Quite suddenly we were all vulnerable to illness, perhaps death; to increased anxiety; to fear for loved ones who fell sick; to bereavement. Heads of state were no safer than ordinary people living in apartments or suburbs, and researchers were every bit as vulnerable as their participants. Perhaps one small positive side-effect of the pandemic is this: we can see more clearly that we are all vulnerable to changing circumstances resulting in trouble or trauma. Which does not mean we are all vulnerable all the time – but that any of us may be, or may become, vulnerable at any time. As researchers, I think it is essential for us to be aware of this, and ready to face and manage it when it occurs.

Vulnerability and sensitivity have something in common. Just as it is not possible to predict from group membership who is and is not vulnerable, so it is not possible to predict who will and will not be upset by a topic. Of course some topics are likely to be upsetting: female genital mutilation, suicide, sex work, and so on. And we need to put whatever precautions we can in place if we are investigating topics like these, that are evidently sensitive: to make the experience as safe as possible for our participants, and for ourselves. But we cannot be sure that everyone will find these topics equally sensitive; there are people who can take such topics in their stride.

Conversely, some people may be upset by apparently innocuous topics. Suppose a market researcher is investigating people’s perceptions of homewares. In one interview, the researcher asks their question about teapots, and realises their participant is struggling to hold back tears. The participant explains that the last gift ever given to them by their beloved mother, who died exactly one year ago, was a teapot. Perfectly plausible; impossible to foresee.

So, we can’t always predict everything everyone will be sensitive about, and we shouldn’t pretend we can. But, again, we need to equip ourselves with the mental and emotional intelligence and dexterity to be able to deal with the unexpected. Because if there is one thing we can predict, it is that at times we will face the unpredictable.

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One Year In Lockdown

Today marks one year since I went into self-isolation on my return from my last work trip to the universities of Southampton and Stavanger, ten days before the UK went into its first official lockdown. In the last year I have not travelled by train, bus, plane or taxi; had a drink in a pub or bar or a meal in a café or restaurant; entered any house other than my own or my father’s. I go to the supermarket once a week most weeks, and have been to seven other shops in the course of the year. Mostly I have been at home, because even when we were allowed to go to pubs and restaurants and visit other homes last summer, I didn’t think it was safe. Not least because by then I knew I had three of the four risk factors for long-haul COVID (I’m female, over 50, and suffer from asthma; the risk factor I don’t have is being overweight).

I have seen one friend, who lives nearby, every few weeks for a distanced walk. Two families visited me in my garden last summer, one of them twice, again at a distance, and I attended a small distanced gathering in another friend’s garden. Last weekend I saw that friend again for a distanced walk. Once in a while I get to chat to my neighbour over the fence.

On 2 April 2020 my mother died from the virus. We didn’t have a funeral. It was June before I could visit and hug my Dad. Then there was my more recent assessment and diagnosis, which was hanging over me for most of the year. And it was a tough year for other reasons apart from lockdown, too; reasons connected with the stories of people close to me which are not mine to tell.

There are many ways in which I have been, and am, lucky. Being able to stay at home is a privilege. I can work in my own office, and I have work that I enjoy, which provides an income and a wonderful distraction and solace. I live in a spacious house with a garden, a park ten minutes’ walk away, and lovely countryside within a few minutes’ drive. I can afford some luxuries as well as necessities. I am not alone; my partner has been an invaluable support. The people in my town are mostly good at wearing masks and distancing, and smiling, and being kind. I can see trees, grass, and flowers from my desk. I have had my first vaccination. Throughout this year I have been able to keep myself, my family, and others safe from the virus, by staying at home.

It is hard to say when we will come out of this situation. People are saying in the summer – but then people said that last year. When it does happen, I think it will be weird. I know there is a chunk of grieving for my mother that I have been unable to do because my life is so restricted. I know this because I had a dentist’s appointment earlier this year, and found myself in tears in the waiting room, and then realised it was the first time I’d been to the dentist since before my mother died, and that had triggered a grief response. In the normal course of events we would get through all those ‘firsts’ in a few weeks or months. I have a whole lot of them still to come.

Being among people again will also be weird. Recently I saw a short video on a WhatsApp group, from my family in Australia, in a bar, showing off some fancy cocktails. In the background I could hear people talking and laughing, and music – the normal sounds of people in a bar in the early evening; sounds I haven’t heard for a year. I had forgotten. There is so much I have forgotten. My Dad lives a couple of hours’ drive away and I have been visiting him every other weekend since last June. A couple of months ago, coming home, the motorway was jammed, I had to detour, and the car needed fuel. So I stopped at a petrol station where I couldn’t pay at the pump as I usually do. I went into the shop and walked up and down the aisles in bewilderment, dazzled by the colours and the products. I had forgotten about ready-made sandwiches, and ‘sharing packs’ of crisps and chocolates, and branded self-service coffee machines.

I think this forgetting is a kind of self-protection. It is hard to think about the way I used to live. I can’t bear to look at the ‘before’ pictures on my phone. So I get up each morning, exercise in my house, go to work in my office in the garden, take a short walk, go home at the end of the day, put a few pieces into the current jigsaw, eat, rest, go to bed. The next day is the same, and the next.

One effect of this is that I rarely have anything to talk about with other people. Nothing happens. There are no plans to make. I rang a friend the other day.

“I bet you don’t have any news,” he said gloomily.

“I do, as it happens.”

He perked up immediately. “You have actual news? Don’t tell me yet, let me savour this moment.”

After I told him about my diagnosis, he wanted to talk about it for a long time, examining it from all angles, like a shiny new toy.

Staying at home is the sensible thing to do, for those who can, when there is a global pandemic. But living with constant uncertainty takes a toll. I don’t think we will know the full extent of that toll until after the event. And we don’t know when ‘after the event’ will be. There is likely to be an element of Russian roulette when restrictions start to lift, for two reasons: first, the virus is still around, and not everyone has been vaccinated or otherwise developed immunity; second, the vaccine won’t work for everyone, and we can’t know who it doesn’t work for until it doesn’t work for them.

So, am I going to be writing another of these posts, a year from now? I hope not, but it is possible.

Coming Out As Autistic

Regular readers of this blog may remember that I received an informal diagnosis of autism in July 2019. Initially, I didn’t plan to seek a formal diagnosis, but then I learned about the “lost generation” of autistic people, mostly women, who were not diagnosed in childhood because the way their autism manifested didn’t fit the diagnostic criteria which had been developed from observing some autistic boys. As a lifelong feminist, I decided I needed to find out for sure so that, if I did receive a formal diagnosis, that would, if only in a very small way, help to redress that imbalance.

So I went to my GP in August 2019, armed with a copy of Camouflage: The Hidden Lives of Autistic Women, an excellent graphic novel by Sarah Bargiela and Sophie Standing. I had also taken the AQ10 test and scored 9 out of 10. My GP was kind, understanding and knowledgeable; he told me he had been through the process with other people. In September 2019 he sent me a 50-question test which I completed and sent back, though parts of it seemed rather out of date (Q: “Do you remember all the phone numbers you use?” A: “I used to but I haven’t had to dial a number in years, have you not heard of mobile phones?”)

Then I heard nothing for a year. I suspect the pandemic didn’t help. By summer 2020 I was getting antsy, and an autistic friend of mine referred me to an autistic friend of hers for advice. We chatted on WhatsApp and my adviser said she was sure I was autistic. She suggested I read two books: Divergent Mind by Jenara Nerenberg and Spectrum Women: Walking to the Beat of Autism edited by Michelle Garnett and Barb Cook, to ‘find the fruits in my personal autism fruit salad’. This is an ongoing process, but so far I have identified:

  • A degree of alexithymia (impaired awareness of emotions)
  • Sensory processing problems (all sorts of ‘normal’ things I can’t stand: nightclub environments, labels in my clothes, jewellery hanging off me and clanking, the sound of a tap dripping, the feeling of most synthetic fabrics – I could go on)
  • Information processing problems (I have great difficulty in staying engaged with talk radio, audiobooks, podcasts etc; even if it’s something I want to listen to, I can’t concentrate and my thoughts drift off elsewhere, and I find TV boring)
  • Co-ordination problems (my balance is not good and I’m very clumsy; I need to investigate the proprioceptive and vestibular senses, and interoception, to see if I can figure out why).

Also I have a couple of the auto-immune health conditions which are common in autistic people – in my case, asthma and fibromyalgia. And there’s plenty else besides: literal thinking; ability to focus intensely on a task of interest; inability to remember left and right, or which way to turn a screw to tighten or loosen it; plain speaking; strong dislike for bright lights and loud music; repetitive thoughts (they can be really annoying); silent counting (that’s very soothing); very acute sense of smell (not always a blessing); and lots more.

My adviser also suggested I join a couple of Facebook groups for autistic women. She explained that self-diagnosis is accepted in the autistic community – I later discovered this is not least because some people in some countries can’t get an actual diagnosis, e.g. because it’s not covered by health insurance (oh I do love the NHS). So I joined the groups and found them hugely helpful, though ironically I haven’t been on FB in recent months, because I can’t stand the new design, because, yes, I’m autistic!

The assessment was done by the Adult ADHD and Autism Service of my local NHS Healthcare Trust. The process began in early December with a phone appointment which, to my surprise, was a battery of personal questions. (Nobody expects the Spanish Inquisition!) Tell me about your family, your early childhood, your schooling, your friendships… The woman asking the questions was very kind, but it was, as one friend said, like therapy without any actual therapy. Then the Service emailed me a form for ‘someone close to me’ to fill in, which asked about my ability to engage socially (not bad in some circumstances), whether I take things literally (hell yeah, gets me into all sorts of trouble), my response to changes of plan (noooooo!!), and so on. The form was completed over the winter holiday and sent back at the end of December.

Then on 22nd February I had a video appointment with a mental health nurse. He told me the assessment was multi-disciplinary and that, although in this appointment I would only see him, he had consulted with his colleagues. Then he asked me another whole bunch of questions, some of which I had already been asked by the woman on the phone, and finally told me I am autistic. “There is no doubt,” he said. He also explained that they don’t give classifications, just a diagnosis, but I don’t care what kind of autistic I am, it’s enough to have a word to explain a whole lot of things I have spent my life being unable to understand.

Over the last couple of weeks I have come out in person to my family, friends, and colleagues. A few people knew I was going through the assessment; most didn’t. I know I have been extremely lucky that almost everyone reacted positively and supportively. Several friends said things like ‘I don’t know anything about autism but I know you and I love you and please tell me all about it when we speak’, which was fine by me. Many were genuinely interested, which was nice. And some colleagues floored me with the level of their support and care.

Now I am coming out in public. I am happy and proud to be autistic.

This blog, and the monthly #CRMethodsChat on Twitter, and my YouTube channel, are funded by my beloved Patrons. It takes me more than one working day per month to post here each week, run the Twitterchat and produce content for YouTube. At the time of writing I’m receiving funding from Patrons of $74 per month. If you think a day of my time is worth more than $74 – you can help! Ongoing support would be fantastic but you can also make a one-time donation through the PayPal button on this blog if that works better for you. Support from Patrons and donors also enables me to keep this blog ad-free. If you are not able to support me financially, please consider reviewing any of my books you have read – even a single-line review on Amazon or Goodreads is a huge help – or sharing a link to my work on social media. Thank you!

Aftercare in Social Research

aftercareWhen does a research project end? When a report has been written? When a budget has been spent? When the last discussion of a project has taken place? It’s not clear, is it?

Neither is it clear when a researcher’s responsibility ends. This is rarely spoken of in the context of social research, which is an unfortunate omission. A few Euro-Western researchers recognise the need for aftercare, but they are a tiny minority of individuals. There seems to be no collective or institutional support for aftercare. In the Indigenous paradigm, by contrast, aftercare is part of people’s existing commitment to community-based life and work. Euro-Western researchers could learn much from Indigenous researchers about aftercare: for participants, data, findings, and researchers ourselves.

The standard Euro-Western aftercare for participants is to tell them they can withdraw their data if they wish. However, it is rare for researchers to explain the limits to this, which can cause problems as it did for Roland Bannister from Charles Sturt University in Wagga Wagga, Australia. Bannister did research with an Australian army band, Kapooka, which could not be anonymised as it was unique. Band members consented to take part in Bannister’s research. He offered participants the opportunity to comment on drafts of his academic publications, but they weren’t interested. Yet when one of these was published in the Australian Defence Force Journal, which was read by band members, their peers, and superiors, participants became unhappy with how they were represented. Bannister had to undertake some fairly onerous aftercare in responding to their telephone calls and letters. Of course it was far too late for participants to withdraw their data, as this would have meant retracting several publications, which is in any case limited in its effectiveness. However, particularly in these days of ‘long tail’ online publications, we need to be aware that participants may want to review research outputs years, even decades, after the substantive work on the project is done. We have a responsibility to respond as ethically as we can although, as yet, there are no guidelines to follow.

Data also needs aftercare, particularly now that we’re beginning to understand the value of reusing data. Reuse increases the worth of participants’ contributions, and helps to reduce ‘research fatigue’. However, for data to be reusable, it needs to be adequately stored and easy to find. Data can be uploaded to a website, but it also needs to be carefully preserved to withstand technological changes. Also, it needs a ‘global persistent identifier’ such as a DOI (digital object identifier) or Handle. These can be obtained on application to organisations such as DataCite (DOIs) or The Dataverse Project (DOIs and Handles). As well as enabling reuse, a global persistent identifier also means you can put links to your data in other outputs, such as research reports, so that readers can see your data for themselves if they wish. This too is an ethical approach, being based in openness and transparency.

Then there are the findings we draw from our data. Aftercare here involves doing all we can to ensure that our findings are shared and used. Of course this may be beyond our power at times, such as when working for governments who require complete control of research they commission. In other contexts, it is unlikely that researchers can have much say in how our findings are used. But we should do all we can to ensure that they are used, whether to support future research or to inform practice or policy.

Researchers too need aftercare. In theory the aftermath of a research project is a warm and fuzzy place containing a pay cheque, favourably reviewed publications, and an enhanced CV. While this is no doubt some people’s experience, at the opposite end of the spectrum there are a number of documented cases of researchers developing post-traumatic stress disorder as a result of their research work. In between these two extremes, researchers may experience a wide range of minor or major difficulties that can leave them needing aftercare beyond the lifetime of the project. For that, at present, there is no provision.

Not much has yet been written on aftercare in research. If it interests you, there is a chapter on aftercare in my book on research ethics. I expect aftercare to be taken increasingly seriously by researchers and funders over the coming years.

An earlier version of this article was originally published in ‘Research Matters’, the quarterly newsletter for members of the UK and Ireland Social Research Association.

 

Academic taboos #1: what cannot be said

An earlier version of this article first appeared in Funding Insight in summer 2017; this updated version is reproduced with kind permission of Research Professional. For more articles like this, visit www.researchprofessional.com.

what can't be saidAcademia is a community with conventions, customs, and no-go areas. These vary, to some extent, between disciplines. For example, in most STEM subjects it is taboo for research authors to refer to themselves in writing in the first person. This leads to some astonishing linguistic contortions. Conversely, in arts disciplines, and increasingly in the humanities and social sciences, it is permissible to use more natural language.

It seems, though, that some conventions exist across all disciplines. For example, conference “provocations” are rarely provocative, though they may stretch the discussion’s comfort zone by a millimetre or two. Then conference “questions” are rarely questions that will draw more interesting and useful material from the speaker. Instead, they are taken as opportunities for academic grandstanding. Someone will seize the floor, and spend as long as they can get away with, effectively saying: “Look at me, aren’t I clever?” I have found, through personal experiment, that asking an actual question at a conference can cause consternation. I confess it amuses me to do this.

Perhaps the most interesting conventions are those around what cannot be said. Rosalind Gill, Professor of Cultural and Social Analysis at City University of London, UK, has noted the taboo around admitting how difficult, even impossible, it can be to cope with the pressures of life as an academic (2010:229). The airy tone when a colleague is heard to say: “I’m so shattered. The jobs on my to-do list seem to be multiplying. Haha, you know how it is.” Such statements can be a smokescreen for serious mental health problems.

A journal article published in 2017 by the theoretical physicist Oliver Rosten made a heartfelt statement about this in its acknowledgements, dedicating the article to the memory of a late colleague, and referring to “the psychological brutality of the post-doctoral system”. Several journals accepted the article for its scientific quality but refused to publish the acknowledgements in full; it took Rosten years to find a journal that would publish what he wrote. He has left academia and now works as a Senior Software Developer at Future Facilities Ltd in Brighton, UK.

Another thing that cannot be said, identified by Tseen Khoo, a Lecturer in Research Education and Development at La Trobe University, Melbourne, Australia, is that some academic research doesn’t need funding, it just needs time. This is anathema because everyone accepts that external funding makes the academic world go round. But what if it didn’t? What if student fees, other income (e.g. from hiring out university premises in the holidays), and careful stewardship was enough? What if all the time academics spent on funding applications, and making their research fit funders’ priorities, was actually spent on independent scholarship? It seems this is not only unsayable but also unthinkable. One of Khoo’s interlocutors described this as “a failure of the imagination”.

Another unspeakable truth I’m aware of is for someone to say that the system of research ethics governance is itself unethical. Ethics governance is something to comply with, not to question. That has led us to the situation where most research training contains little or no time spent on research ethics itself. Instead, young researchers learn that working ethically equates to filling in an audit form about participant welfare and data storage. They don’t receive the detailed reflective instruction necessary to equip them to manage the manifold ethical difficulties any researcher will encounter in the field.

I wonder what role the lack of research ethics education plays in the increasing number of journal articles that are retracted each year? I would argue that we need to separate ethical audit from ethical research, because they have different aims. The former exists to protect institutions, the latter to promote the quality of research and ensure the well-being of all concerned.

These areas of silence are particularly interesting given that academia exists to enable and develop conversations. However, I think that as well as acknowledging what academia enables, we also need to take a long hard look at what academia silences.