You give, I take - or it might not be ethical

- with thanks to Dr Sara Wheeler (Bangor University) for provoking me into thinking and writing

The researcher-researched relationship is complex. Although ‘researcher’ is fairly universally used for the person who initiates the research relationship, the term for ‘the researched’ is not. Indeed it is highly contested. If I choose to participate in someone else’s research, I might be their ‘subject’, ‘participant’, ‘co-researcher’ or something else depending on how ‘the researcher’ frames their research.

So what kind of relationship do these two people have, and how does that relate to what motivates ‘the researched’ to take part? And, most importantly in this context, what does ‘ethical’ mean?

My university ethics handbook requires any ‘researched’ person to give informed, freely-given, non-coerced consent to be part of the research. The ‘researched’ person must know they can withdraw at any time without giving a reason and without any comeback. There are particular concerns about anything that can be seen as an inducement to take part, or that could make the person feel obliged to take part or to continue taking part.

That’s fine as far as it goes. It ceases to be fine if it is used as an argument for avoiding any reciprocity in the relationship.

Some relationships are essentially impersonal and transactional, for example involving a payment for taking part. This can work fine for one-off experiments, tests and surveys. The researcher wants something from you (blood, time, filling in a form) and the researcher gives you money. You weigh up the (in)convenience to yourself, the payment and your interest in the research; you decide if you do or don’t want to take part.

Not all research can be so impersonal. And here is where the nature of the researcher/researched relationship and the motivation to take part in research move into murkier ethical water. This is quite separate from any considerations of how the relationship affect data collection and analysis – that’s for another blog!  

Rapport and transparency

Some kinds of research (ethnography, action research, inclusive/participatory research) require a personal relationship between researcher and researched. Or at least they require what is universally termed in handbooks on qualitative research as ‘rapport’.

Can we gain rapport and have a personal relationship in an ethical way, in a way that does not induce someone to take part nor blur the boundaries of the research relationship? Ethics rules out ‘fake friendship’, an accusation sometimes justly levelled at researchers who have understood the importance of rapport to collecting good data but who have used it more as a way to groom ‘the researched’ than to establish a genuine two-way rapport. And if we are to have genuine rapport, particularly where the relationship goes beyond a one-off meeting, how can it not involve genuine inter-personal exchanges?

To me, transparency is key to an ethical relationship. Both parties need to be aware from the start and throughout the research of what they bring to the research relationship, their own power and vulnerability, and the power and vulnerability of the other person. Both parties need to be very clear about the nature of the relationship, in particular its boundaries. This can only be done through on-going communication, starting with the informed consent information pack.

I would argue that transparency and clarity about the relationship and boundaries are probably more important than where the boundaries lie. If both parties know that this is an intense relationship involving considerable self-disclosure and sharing of knowledge/power/access but that it is time-limited and will cease when the research relationship ceases – well, that’s hard to pull off but as any short-term therapeutic community knows, it is possible provided both sides continually remind each other of the short-lived nature of the relationship and have an agreed formula or ritual to bring the relationship to a close.

Inducement and two-way transactions

The issue of inducement to take part and continue to take part in research has to be taken very seriously.

As a university, we accept that it is possible to give someone cash in exchange for taking part in research without that being an undue inducement to take part. The researcher gives cash and gains data. The researched gives something of themselves (blood, time, information) and gains cash.  It is a two-way transaction.

If this is acceptable, surely it must be possible for a researcher to give someone access to knowledge, ideas or practical help in exchange for taking part in research, without that being seen as unethical.

The difficulty, perhaps, is that impersonal, financial transactional relationships are easier to police than personal ones. It is easy to pay someone £10 and keep a financial audit trail. It is much harder to police yourself and to be policed by others where the transaction is personal.

If the issue is essentially one of policing, then I would suggest two possible approaches.

• One approach is to think in terms of child protection policies where an adult needs to work close and personally with a child or young person. One of the keys, particularly when the relationship involves personal transactions, is to have a third party who is aware of your interactions with that particular child. You might copy the third party into emails you send, and make sure the third party is aware of times you phone or meet the child and in particular anything you say, offer or do that could be misconstrued as “grooming” or stepping outside your professional role. Yes, it can feel bureaucratic and cumbersome, but it provides protection to everyone. It guards against accidentally slipping over the line into an inappropriate relationship while allowing a healthy personal relationship to develop.
• An alternative approach for research relationships might be to route any personal transactions via a more formal route, such as a TimeBank. By formalising the exchanges, it protects against ‘boundary-creep’, where the research relationship subtly shifts into a different kind of relationship without either party noticing until the boundary has been long breached. The ethical implications of providing knowledge/access/practical support become similar to the ethical implications of financial transactions.

Fear of breaching boundaries, fear of providing inducement to take part in research, fear of being unethical or unprofessional can lead to the very situation that the researcher is trying to avoid – exploitation of the ‘researched’. It can turn into the patently absurd “You give, I take – otherwise it might not be ethical”.

As researchers, we need to be extremely careful in our relationships. As researchers, we need to be transparent, honest and human. As researchers, we need to be accountable and auditable. But this does not mean we need to remove ourselves from our relationships with the people who we are researching. It does not mean we have to withhold who we are and what we know – particularly when the research relationship is ongoing. 

What we must always be is:

• transparent
• mindful of power and vulnerability

and make sure we always have a way to be held to account for our relationships in the field. 

Boggled eyes and fellow conspirators

There's only so much data you can look at before your eyes start focusing independently, or cease to focus at all.

I'm so so so lucky with my fellow conspirators (officially collaborators, but sometimes we feel a little more like conspirators). We talk, we think, we chip in. And we are uncompromsingly honest and humblingly (if that's a word) vulnerable with each other.

And we generate a LOT data.

I've just worked through a 54 page transcript for the second time. And that was from our shortest meeting.

So I'm giving my eyes a bit of a break to blog. I'm so glad I got thrown out of my Latin class and sent to the typing group in my distant youth. It means I can touch-type this while looking out of the lead glass windows of the Management Centre and across the Menai Straits to Anglesey so my poor eyes can relax and unwind.

I'm not sure if it is as easy for my brain to unwind. Half of me is blogging, and the other half is still thinking about the key categories and themes that seem to be emerging - that half of me is turning them over in my mind and wondering if they are keepers or for discarding as distractions.

I'm so glad it's not all up to me!

That's one of the joys of doing what is loosely a collaborative analytic autoethnography*. I don't have to come up with the answers. I can work with five perspectives, sometimes given independent of each other, sometimes given as we work together during discussions.

The downside for my poor boggled eyes is that I get five times the data to look through - repeatedly. I'm the only one of us who is trying to get a postgraduate qualification out of this, so I'm the only one who has to work quite so rigorously with the data.

Onwards and upwards - or deeper down the rabbit hole. Time to get back to those data.

*It's definitely collaborative. It's definitely analytic - with more than a touch of evocative from one of us. And it's ethnographic - I guess? I've never quite got my head round what makes something an ethnography. And we are writing personally about our personal experience and views. But unlike CAEs that I've read about, we are focusing on a single shared event (a "coffee shop conversation" rather than a life experience that has been part of each of our lives (like experience of oppression or motherhood or being disabled). It's also different from CAEs that I've read because I'm the only academic-ish person; my collaborators/conspirators are friends from outside the academy. 

To blog is to think (the joys of pre-coding)

I started blogging because I wanted to get practise in the art of writing and seeing what comes out.

I wanted to practise blogging because I know good research notes are vital for at least two reasons.

• We forget the facts and details when we finally come to write up our research, so we need notes written at the time to which we can refer. 
• Blogging to ourselves is about the only way to keep a record of our thought processes as we analyse our data. 

I've started data analysis and I'm blogging my thoughts as I go (into the same Word document that I'm using for my pre-coding data analysis work). And I can see just  how vital it is that I blog as a record of my thought processes. What I've done is

• read a transcript
• re-read and underline bits that look interesting
• type the interesting words/phrases into Word while roughly grouping words/phrases together
• go back over the groupings to see if they do group together enough to merit a heading (a kind of pre-code). 
• go off for a stiff coffee
• come back and looked at the groupings and headings and add some blog-type notes underneath each grouping
• have more coffee
• look at the groupings, look at the blog notes and (in many cases) add a second blog

and all of that is before I've even got to coding, or comparing transcripts.

What I didn't realise before I started blogging is that it is only as I put things into words that I realise what I am thinking. In fact, it's more than that. It is as I put things into words that I form my thinking; and as I hit the backspace key to re-draft the words, I am refining, changing and clarifying my thinking. The very act of blogging, of forcing myself to put things into words, creates my thinking. And in the same act of blogging, I get a record of what my thinking was.

So there are times in my transcript blogs when I've had to stop myself hitting the backspace key.  Instead, I add an extra bit in square brackets, because my first thought was valid as I thought it. And I need to keep that thought, captured for posterity (or at least until I've published the research), because it is part of the trail of how my thinking about the data has developed. I may never need to look back over that trail, although I think I will want to out of curiousity. But what is very sure is that if I ever did need to examine the trail, I could never recreate it because as soon as a thought has been superceded, I tend to forget it.

There you have it. Time for me to get back to the transcript blogs. I won't be inflicting any of those on you, having been to a fascinating talk about how anything that has been blogged online counts as having been published, so it becomes really complicated when you later want to use it in a research degree dissertation/thesis. Or something like that. Not sure I really understood!

Hope the detail of how I've done some of my pre-coding analysis is helpful to some of you. I'm not saying I've done my pre-coding brilliantly, but it can be really hard to find out what actually goes on between raw transcript and formal coding.

Mindfulness - for those mindless stigma moments

Mindfulness is a potentially powerful way to still an unruly chaotic mind, ground during dissociative or flashback phases and pull out of the "I'm useless, everything is wrong" downward spirals. And for me at least, it works (sometimes, as one of an arsenal of tools).

Looking back, it's ironic that I learned mindfulness because mental health was seen as my problem. It was certainly my life getting screwed up, so in a very real way it was my problem. But in another sense, my mental health was problematic because of other people's response to me.

I am different. I hope I will always be different. I love myself as I am. And in learning that, my life stopped being screwed up - I stopped having a mental health problem and simply had a mental health difference. It wasn't mindfulness that got me to this point - that's another story for another day.

My point is that, these days, my biggest use of mindfulness is to handle other people's reactions when I stand up as someone with a long term mental health difference.

This is Mental Health Awareness Week. It has the theme of mindfulness.

Please promote awareness.

Please promote mindfulness as one tool among many.

Most of all, please,remember that most of the disabling, screwing-lives-up side of mental health is down to attitudes to mental health, not a mental health condition.

I love field work - especially when the technology works

With hindsight, I really should have double-checked before the meeting which button to press to start video recording...

It's strange the things we forget when we are under pressure! I'd had my training in how to use the camera from the wonderfully talented and excellent teachers at No27 Media. We had needed to start with "this is how to switch it on", and then we'd got a long way in a short time. And I had been practising how to edit footage since. I can now subtitle and get a video onto YouTube.

But...

Come the pressure of real life field work, and numpty me was floundering around having forgotten the second step. I got it switched to video. But then couldn't for the life of me remember how to start recording - although thankfully I did remember that a little red light would mean I'd found the right button.

Actually, it did no harm. Someone else was able to sort me out. And me floudering around certainly did a lot for undermining the default dynamic of "me powerful researcher, you less powerful participant".

Videoing is a interesting expereince, especially in a public area. I'd carefully selected and reserved a table where no-one could accidentally end up in shot. The camera was set up, and carefully checked to make sure no-one would walk past or appear in the background, but that all of us could be seen.

And then we had the interesting moment. Tucked away from us was a children's chalk board area. There was no chance of getting any of the kids on camera. They wouldn't walk near the camera lines to get to the chalk board. The camera was pointing away from the chalkboard area.

I have kids, so I really shouldn't have underestimated children's ingenuity, randomness and curiousity - or the desire to suddenly play tag under and round the cafe tables... That was the moment when the tripod got knocked off the carefully selected angle and little kids who haven't signed informed consent might possibly have ended up peering down the lens for a milli-second before I rescued and re-angled the camera. If that did happen, I'm going to be so grateful for that video editing lesson!

I didn't dare check last night whether the camera had actually recorded the meeting. I didn't even dare check that the voice recorder (my backup) had worked.

As it turns out, I am pleased to announce that despite my clumsiness and ignorance, my research is now the proud parent of almost two hours of footage. Wish me luck as I get transcribing and analysing!

What's in a label?

A facebook friend got me thinking.

He's doing an amazingly important piece of work, as chair of Cardiff People First, systematically checking out the feel and accessibility of pubs to help other people with learning difficulties to feel more confident to go out for a pint. But for some reason, he has been made to feel that this isn't "work" because it involves drinking a pint in a pub.

As a good qualitative researcher, how else is he supposed to check out the feel of a pub? He can't exactly go in with a questionnaire or check list - but if he had gone for that approach, then I'm sure no-one would have queried whether what  he was doing was work.

It's a bit like a certain person who is pretty unimpressed that I get paid to "drink coffee and gossip", so I have great sympathy with my facebook friend.

Now I don't know if my facebook friend has even heard the phrase "qualitative research", but he's doing a bloody good job at it as far as I can see.

I could rant a bit more about social attitudes towards qualitative and quantitative. But my facebook friend has to face another challenge to the value and validity of his work on top of the one faced by all of us qualitative researchers.

Because he has a learning difficulty, the definition of "work" becomes even more complicated. He's not just caught in the "qualitative is just playing around; quantitative is the real work". He's also caught in a Kafkaesque world where labels for things done in the daytime take on strange new meanings.

Common words used for what people with learning difficulties do in the daytime are:

• work 
• volunteering
• day placement
• student/trainee

If I use those terms of someone who doesn't have a learning difficulty, I make certain assumptions.

• If someone says they "work", I assume they get paid at least the minimum wage or perhaps they are self-employed.
• If someone says they "volunteer", I assume they choose whether to do it, and can choose to go and volunteer somewhere else.
• If someone says they have a "day placement", I'm not sure what I'd assume - I'd have to ask them a bit more about what they meant and what  they did.
• If someone says they are a student or trainee, I assume they are on a time-limited course with a qualification at the end.

Now enter the world of people with a learning difficulty. A few people, against the odds, can use these words with their everyday meaning.

The majority? Well, they get special meanings, along with their special "learning difficulty" label. And no-one seems to notice.

• If someone with a learning difficulty says they "work", chances are they get £20 a week and the organisation is paid to provide the "work" placement.
• If someone with a learning difficulty says they "volunteer", chances are they have no control over where they volunteer because there is a contract between two organisations that locks the person into "volunteering" in a fixed role in a fixed organisation.
• If someone with a learning difficulty says they have a "day placement", well that means they go to some kind of day service - maybe a day centre for leisure activities or more likely a social enterprise where they do something productive. Actually, most people with a learning difficulty who have a day placement with a social enterprise will tell you they have a job or go to work - and if they are lucky they get their £20 "pay packet" each week. 
• If someone with a learning difficulty says they are a student or trainee, it's a fair bet that they will be there for years, with no clear career path, qualifications or job at the end.

I'm very glad to say there are exceptions to this.

Yesterday the Guardian wrote about a shining example of TESS in Coventry. Cynically, from the article's title, I had assumed it was about yet another scheme to get people into paid work that only ever got people unpaid work experience or volunteering. I was so pleasantly surprised to be proved wrong. Sadly, it's threatened with closure.

In Wales, our NHS has been calling a spade a spade. Project Enable (check out 10:44 of the video and Joe Powell's comment) does not pretend to provide work. What it says it provides is internships - and they use the same meaning for internship as everyone else.

And Barod itself doesn't muck about with labels. When we say we are equal directors - we are. Doesn't matter if you do/don't have a learning difficulty label - the buck stops with you if you are a director.

So, back to my Facebook friend. He has to contend with the learning difficulty label and all the meanings that brings to the word "work",  On top of that, he has to contend with the common social assumption that quantitative research is real work - whereas us qualitative researchers are slackers who just "drink coffee and gossip".

And he still keeps going. Respect!

Radical surgery needed

I promise no rants this time. But just to recap:

We don't need the sticking plaster of reasonable adjustments in Wales. We need radical surgery.

I believe it is possible for public life in Wales to become inclusive. But...

it requires a different way of seeing the world, different way of relating with ourselves and other people, different ways of planning and different ways of organising and doing stuff.

To me, that adds up to some pretty radical surgery for public life in Wales.

Pre-op

Step 1 is to believe that inclusive public life is a) possible, b) desirable and c) is stronger than a public life that excludes so many people. If you need help getting your head round that, check out the now-finished Evolve, part of Chwarae Teg's Agile Nation project.

Step 2 is to get your head round Shared Spaces, a way of thinking about how we relate.

Step 3 is to get the most diverse bunch of mystery shoppers possible to check out, honestly, what it's like to try to be part of public life. And then tell you. Don't be devastated; we know (most of) you didn't mean to shut so many people out; you just didn't realise what you were doing.

So far, so straightforward. There are routemaps, tools and examples for all the above.

Then the fun starts.

Planning for experimental surgery

Let's start off small. How do you organise an inclusive public meeting?

I will be honest. I don't know. I haven't been to one. And I don't claim to have run one.

What I do know is that I make assumptions whenever I organise anything. We all do. And the problems come because we unconsciously assume people are like us or people we know well. So our assumptions mean we come up with something that works for us, rather than works for anyone.

Here are a few assumptions I know I used to make. And I see these assumptions at almost every public meeting I go to. We don't even notice these assumptions because they are true for most people traditionally involved in public life. So when someone pops up who doesn't fit the mould we've made, we often get a bit flustered.

We usually (unconsciously) assume:

• people drive or have access to a car
• people are fully mobile
• people can hear
• people can see
• people can read and write
• people can listen, think and plan a response all at the same time
• people have enough stamina for an 8 hour working day with only few breaks
• people use language the same way as you, and know the same jargon
• people know when and how to break into a discussion to get heard
• people know what to wear (and have access to what they think they should wear)
• people can afford to cover their own expenses, or at least pay up front and wait to get the money back

You can probably add assumptions of your own - and please do add them in the comments. It's the old Johari window effect; The dangerous part of the window is where I'm not aware of what I don't know.We made a video about the whispering service - a way to include people who don't follow public-life-speak. And to our shame, it never crossed our minds to subtitle it because none of us in Barod is D/deaf. So we excluded a whole bunch of people from a video about how to include a another (probably overlapping) bunch of people. We are very grateful to some lovely twitter friends who gently pointed this out - and I'm learning how to subtitle and video edit so we can do something about it.

First attempts at radical surgery

As Barod, we are learning and developing prototypes for more inclusive ways of running meetings. Our wonderful friends at Good Practice Wales and Working With Not To give us opportunities to test them out. 

We routinely ask, when invited to discussion meetings, for a series of things that make it easier for Barod to take part:

• people's willingness to send information and presentations in advance so we can take time to prepare (so we have space to think, reflect and check things out in advance)
• people's tolerance if we need to ask someone to slow down, repeat what they said, rephrase what they said or allow one of us to double check we have understood (so we aren't left with a choice of embarrassment at asking or remaining clueless)
• an agreement whether speakers will keep things plain, clear, slow and jargon-free, or for Barod to provide a translator for anyone who struggles with standard public life speak (so we don't look stupid just because we can't process a stream of unfamiliar words quickly)
• a minute or two's gap between a presentation or question and the start of the discussion (so we can stop, think and decide what needs saying by us)
• for everyone to put their hand up and wait to be invited to speak by the Chair (so we know where to look before someone starts speaking, we aren't trying to follow multiple conversations and you don't need to be skilled at breaking into discussion without looking like you are interrupting)

Asking for this involves compromise on both sides. We aren't asking for the gold standard of accessible meetings for people with a learning difficulty [if you want to know more about what a gold standard meeting would be like, ask Barod!]. We are asking people to value us enough to make it possible for us to be part of their meeting. And we do suggest they try these things for all meetings, as experience shows it makes for better meetings for everyone.

Towards an inclusive future?

Experimental surgery is risky. It needs to be based on the best possible information, thinking, skills and expertise. So perhaps what we need is a bunch of people who, between us, fail to fit in with any of the assumptions. If we could work out how to work together on an equal footing, then we'd have the makings of a model for inclusive public life ready to test out. 

Any volunteers? (And any offers to pay foreveryone's time?)