Tuesday 29 April 2014

The C word: consent

Posted by Jenni Remnant & Libby Morrison

This is quite personal as it is about my brother James, who has Down syndrome. In terms of consent to me blogging about this – I have discussed it with him at length and he has no issue about being identified. We decided that it was important the fact that he is my brother stays in, because this isn’t a story about ‘other’. 

Given what I have said above, I can see the contradiction/irony in that this post is, at least in part, about my brother’s lack of understanding of the word ‘consent’. Said in the right tone of voice and body language, my brother would say yes, or no, to almost anything; ‘you don’t want to do that do you?’, or ‘to be really independent* you need to….’, ‘now it’s your choice, but if I were you…’. He is totally and utterly committed and invested in the language of societal norms and government rhetoric – unsurprising when you consider that though much of the improvements gained for disabled people have been led (quite rightly so) from the front by people with physical impairments, the steps for learning disabled adults have been half hearted and almost entirely state-orchestrated.


Often I hear my brother and his friends say things like ‘real men drink beer/have girlfriends/ [insert hetero-normal masculinity based stereotype here]’. When out with him, women have cooed over him, leading him to believe that he is a ‘ladies’ man’. He believes Del Boy is a role model and style icon and has not understood that he is a comedy character that people laugh at. He has had no other option than overtly straight masculinity by which to define himself.

It’s strange, because actually I’m not sure that in another life he would be any of those things. Though I wouldn’t dream of conflating being camp with being gay, he is nevertheless flamboyant, adores musicals and, more significantly, has only had enduring meaningful companionships with men. The relationship he has with his ‘girlfriends’ involve being chaperoned maybe once or twice a month on ‘dates’, and perhaps bumping into them at day services or social clubs. One thing that can be said for the social world provided for learning disabled adults is that it is virtually defined by an obscure heteronormative asexuality (see Murphy 2003, Brown 1994, Yar & Rafter 2014 for more on this) that has resulted in James being a homophobic chauvinist that is terrified of his genitals and what they do. He also desperately wants to get married and have children. I wonder what consent means in terms of his sexuality. Tokenistic as it is.

To give meaningful consent to sexual acts, research participation or medical treatment has some requirements. It requires that those in the position of power (everyone else if you are someone with a learning disability) ask for it. They have to value you enough as a human being to support you in decision making, and provide you with the knowledge necessary to be informed.

James would probably be considered a ‘hard to reach’ participant in public health research. Which is ridiculous – he’s an extrovert – he’d leap at the chance to be involved in anything, he is desperate to be valued. It would take time and resilience on the part of the researcher to peel back the layers of rhetoric he is so programmed to regurgitate, ethical clearance would probably take some time – or would certainly have that presumption made about it, and perhaps this is why he, and the diverse, interesting and knowledgeable population of learning disabled adults is so neglected in public health research. ‘Hard to reach’ is ill-fitting, ‘easy to ignore’ is what he is.

*increase in ‘independence’ often equates to a decrease in support hours for adults with learning disabilities which can be a difficult concept to balance.

Thursday 24 April 2014

52 weeks in public health research, part 16


Posted by Dorothy Newbury-Birch and Jean Adams

From Dorothy Newbury-Birch: I've been working at home for the week going through lots of reviewers comments for a report. The report is larger than my PhD was - 55,000 vs 36,000 words! I have everything I need - coffee, my little bit of India hanging from the window, flowers (got to have for writing) and the little pot is my pot of motivation - this is the pot where the pink paper tabs go when I've finished that point - there is only six in the pot at the moment and 37 left to go but seeing the pot get fuller will be fantastic.

From Jean Adams: I spoke at a lunchtime seminar at ScHARR, Sheffield University a few weeks ago. It was pouring rain when I left Newcastle and I got soaked on the way to the station. By the time I reached Sheffield it was a beautiful day made a little happier by finding some interesting things on the walk from the station up to the university. This poem on the side of a Sheffield Hallam University building is by Andrew Motion. I couldn't read without hearing his voice in my head.

From Jean Adams: this fountain is just outside Sheffield station. I took lots of pictures of it, but my favourite was this selfie. #ego

Hang on...is that the #fuseduck doing some active commuting?


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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Tuesday 22 April 2014

Introducing Fuse duck: coming to a university near you to save Albert Park’s pond

Posted by Avril Rhodes and Peter van der Graaf

Remember when there was a brief outbreak of blog posts on knitting? Remember branded goods and the debut of the Fuse gloves? The gloves flopped spectacularly, strangely no one wanted them, at all. I have the world’s only pair. That was not terribly good news as I still had a wool mountain at home and a one pair of Fuse gloves didn’t make so much as a small dent in the mountain.

Undeterred and still working my way through the mountain, three years on, the latest product is the Easter Fuse duck. Easter Fuse duck is inspired by the brave ducks of Albert Park, who live just across the road from AskFuse HQ, Parkside, Teesside University.  These outstanding ducks co-exist with a number of environmental challenges. These include, without any trace of exaggeration, fishermen with their trailing lines (and a nice line in swearing), large quantities of unsuitable food thrown at them by passers-by, rubbish of all kinds floating around (humans are behind this too), unruly groups on outsize fowl shaped pedalos, and noise pollution from many sources including a café, play park, a roller skating track, and seasonally, a full size funfair. Otherwise it’s a rural idyll.

Albert Park duck pond, Middlesbrough
It’s a tribute to the persistence of nature that despite everything so-called sophisticated humans do to disrupt duck life they continue, and even flourish. Pollution might be one thing somewhat out of our hands (although  not entirely), but why do we keep dropping litter, paying others to tidy it all up, and making it difficult for wildlife? It’s such a commonplace public health hazard (especially in urban areas) spoiling everyone’s enjoyment and consuming resources in the clean-up.

Fuse duck decided it was high tide (boom-tish!) for action; luckily, Fuse duck recognises the value of collaboration wearing the life-belt featuring our combined University colours. He is appealing to all Fuse researchers for help in finding a new home for him after all the public health dangers he faced and to learn more about how to combat these dangers for his fellow feathery friends in Albert Park. With all the expertise in Fuse on tangled-up fishing lines (complex systems), unruly groups (behaviour change), healthy eating in the face of austerity (health inequalities), play parks and roller skating tracks (early life and adolescence), hearing aids (healthy ageing) and knowledge of duck language (translational research), Fuse duck is keen to meet the researchers that can save his pond!

Fuse duck hard at work
So our environmental warrior would like to go on a road trip to visit all the Fuse Universities and public health researchers within them: to sit in on their fascinating meetings, experience their randomised controlled trials (RCTs) first hand, join their physical activities, share coffee mornings and indulge in the latest evidence review with long and incomprehensible titles. If you would like Fuse duck to visit you for a week, please let us know and he could be winging his way in your direction. All we ask is that you let us know how he is getting on in your public health wonderland by writing about his adventures and posting photos on the blog.

After his tour de force, Fuse duck has plans to fly further afield to see our friends in practice and policy land, so watch this space!

Can you give Fuse duck a good home?  If so then email Avril Rhodes on Avril.Rhodes@tees.ac.uk

Thursday 17 April 2014

52 weeks in public health research, part 15

Posted by Lynne Forrest and Martin White

From Lynne Forrest: Having recently passed my viva and officially become Dr Forrest, my thesis has joined a colourful selection of other theses in the bookcase at our Institute, available for others to borrow. I’m not sure how often the hardcopy version will actually be read but it also gets published online 6 months later, which will hopefully increase access (the delay is to allow publication of papers from the thesis first).

From Martin White: This appealed to me on several levels. Fuse partners are working with collaborators across Europe to submit an application for a ‘Marie Skłodowska-Curie action’ – an application to the European Community for an Innovative Training Network (ITN), which will fund 25 PhD studentships. The acronym for our application is ÉTUDE (European Training hUb on behavioural Determinants), hence this musical quote and explanation of its relevance, which serves as frontispiece to our application.

From Martin White: Long delays are part and parcel of journeys on the East Coast mainline, which, if you work in the North East occupy a lot of our time, regularly commuting to and from meetings which inexplicably always have to be in London. On a recent journey, my train was ‘terminated’ at Peterborough and three train loads of people fought to secure a place on the only train going to London. I found a premium spot in the service area of First Class, where I set up my office and returned to reading a PhD. I was two hours late for my meeting…

From Martin White: When you spend 6-7 hours on trains in a day (see other references to East Coast mainline…), you need to seal yourself off from the rest of the carriage to focus on getting work done. My working day always starts (usually at 07.10) with Johan Sebastian Bach. Often a cantata, but sometimes solo cello or violin suites, or the incomparable keyboard works, such as the Goldberg variations. The rhythmic and harmonic structure of Bach makes it perfect for concentrated work.
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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Thursday 10 April 2014

52 weeks of public health research, part 14

Posted by Michael Heasman, Martin White and Lynne Forrest

From Martin White: The MRC has this jigsaw-like object in its 13th floor stair lobby. I think it celebrates 100 years of the MRC (Centenary last year). I attended two meetings: the Population Health Sciences Research Network board, which has overseen ‘methodological knowledge exchange’, including the hugely cited MRC Guidance on the development and evaluation of complex interventions; and the Public Health Interventions Development panel, which funds competitive, small scale research.

From Martin White: At the Public Health intervention Development research funding panel we reviewed 29 applications in less than 3 hours. Two panel members per application. You do the maths. The applications are short (a couple of pages) and the stakes not high (maximum of £150k over 18 months). But, only few will get funded. The MRC assessment criteria demand a high level of rigour and innovation. Only an agreed score of 8 or more can be considered for funding. There is no room for error as an applicant.

From Michael Heasman: no description required.

From Lynne Forrest: This poster appeared in the 3rd floor coffee room at IHS recently, urging us all to take the stairs for health and fitness reasons and also to ‘avoid awkward silences’ in the lift! I do wonder if it might be more useful if the notice were stuck beside the lift on the ground floor? And, as public health evidence is what we’re all about, is anyone evaluating its effectiveness?
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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Tuesday 8 April 2014

10 top tips for getting publishing (tips 1-5)

Posted by Jean Adams

The Institute of Health & Society at Newcastle University has recently set up an Early Career Researchers group. I was invited to speak at their inaugural meeting on ‘publishing’. The brief was to speak for about 20 minutes and cover 10 top tips. I think I was an ECR just on the edge of the time when the phrase started being used, and the research community started to recognise ECRs as a group worthy of attention and nurturing. Sometimes the younger researchers at conferences were invited to pub crawls (not really my thing), but I don’t remember much in the way of encouragement to organise and support each other. The attendance at the IHS ECR meeting was huge and there was a definite buzz in the room. I felt quite excited, and flattered, to be there.

‘Publishing’ is a big topic and so much of how to do it seems to be about experience, working out what works in what situations, and a mixture of good luck and persistence. But I managed to come up with 10 things that felt worth saying – maybe not the toppest tips of all, but some things worth thinking about. The first five are here. I’ll cover the next five sometime in the next few weeks.

1. Know what your paper did (aims) and what it adds (message)


I think there are two sentences that almost all peer-reviewed papers hang on – the aims and the message. The introduction justifies the aims, the methods describe how the aims were achieved, and the results describe what the ‘answer’ to the aims were. You probably know what the aims were (perhaps you shouldn’t have started the research if were clear what you were trying to achieve?). The message might be harder. This is the one thing you want people to remember from your paper. The ‘what this study adds’ box; the ‘citable sentence’. The message is what drives much of the discussion and in some cases may be open to interpretation. So you might have to discuss it with your team to get it clear.

Knowing your aims and message are about knowing where your paper's come from and where it's going; map by Max Roberts

2. Write a detailed plan as a team


I think I have only written a paper plan as a team once in my career. So I can’t promise that this works. But I get the feeling that much drafting and re-drafting could be avoided if a detailed plan for each paper was agreed within the team before the real business of writing got underway. If we all agreed the general argument put forward in the introduction, the sub-headings required in the methods, the crucial tables/quotes/figures to include in the results, and the three or four main points under each sub-heading of the discussion, then perhaps there would be little more than re-wording required at the comments stage. Perhaps?

3. Pay attention to your laziness


We are all lazy. Different people just express it in different ways, and hit the point of can’t be bothered at different points. I’m sure we all do that thing of arguing there is a good scientific reason not to do something, when the truth is we just really cannot find the will to do it. There is a lot of self-discipline required in lots of areas of research, and sometimes you run out. This is okay, understandable, and expected. But it feels to me worth noticing and being truthful – at least to yourself – about when the real issue is laziness and when there is good scientific justification for stopping. Then at least you know what the problem is and how you should address or justify it.

4. Know when good enough is good enough


Which brings me to knowing when to stop. Because hardly any (no?) piece of research is perfect and there does come a point where you have to agree that what you have is good enough for what you are trying to achieve. This point might be different for different things. But you do have to be able to draw a line and move on or else you'll never get to the next project - which is always more exciting/interesting/likely to change the world than the current one.

5. Review, review, review


Papers in peer-reviewed journals are remarkably formulaic. I think the best way to learn to write them, is to read others. And the best way to make yourself pay attention to how other papers are written as you read them is to do so as a peer-reviewer. If you aren’t routinely asked to peer-review for journals (and generally you need a publication record for this to happen), the more senior people you work with probably are. It’s fairly normal either to pass reviews officially on to a colleague via the journal office, or to do a review together with a less experienced colleague. So ask if you want more experience of this. Informal peer-review can also be very valuable – to reviewer and reviewed. We all know that feeling of being too close to a piece of work and needing someone with fresh eyes to notice the glaring mistakes.


OK. That’s it for today. I promise to get around to writing up tips 6-10 in the next few weeks. In the meantime, what are your top tips for getting published?

Thursday 3 April 2014

52 weeks of public health research, part 13

Posted by Melanie Rimmer, Emily Henderson & Martin White

From Melanie Rimmer: Reminds me of the old days of searching journals by hand, card index files, the smell of old books, dusty shelves festooned with dead flies, and the volume you needed was always the one missing from the shelf. Without doubt computer searching is better, but somehow sterile. I miss the romance (but not the dead flies).


From Emily Henderson: Celebrating our new status as a WHO Collaborating Centre! The Centre for Public Policy and Health at Durham University is now a WHO CC on Complex Health Systems Research, Knowledge and Action, which links with Fuse’s new Complex Systems Research Programme.


From Martin White: It never ceases to amaze me how the irony of juxtaposing public health stories (this one courtesy of our very own Blog Editor) with junk food promotions entirely escapes newspaper editors. Nowhere more than in the free dailies that litter our public transport. This piece about a systematic review on financial incentives is rather good, which makes me think it may even have been written by Dr Adams.


From MartinWhite: When a small glass of coke contains 9 teaspoons of sugar, it is hardly surprising that the Coca Cola Corporation is investing heavily in ‘changing the conversation’. Coca Cola wants us to forget about the sugar and do exercise instead to burn it off. Their marketing is widespread in the Alps, as well as in professional sport, leisure and educational settings. Someone tell them why this isn’t the answer please…

-------------------

Just to remind you:
Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Tuesday 1 April 2014

Today the ‘c’ word is – choice.

Posted by Libby Morrison & Jennifer Remnant

Choice is a buzz word, much favoured by politicians. We are continually being offered ‘real choices’! In learning disabilities, choice can be a difficult and complex thing, often linked to other ‘c’ words like ‘capacity’ and ‘consent’ These other ‘choices’ will be examined in further blog posts. But today I will be considering every day, common or garden choice.

When I first began working in the Health and Social Care sector 16 years ago, I very quickly became aware that many service users chose the same things. Of the nine residents in the first care home for adults with a learning disability that I worked in, ALL watched Coronation Street AND Emmerdale. In the next care home with three adults with a learning disability, again all watched Coronation Street and Emmerdale. In fact by the fourth and fifth place I worked in I had realised that it wasn’t just soap operas that all the service users watched, it was specifically ITV – unless it was Strictly on BBC1,  obviously! So despite the ‘choice’ word being used all the time – it was a key area in the 2001 Valuing People white paper – I began to suspect that television viewing might have been more to do with the carers' choice, rather than the service users.

Call me a cynic if you will.

It was the same with music, cinema, theatre and shows. If I look through my local theatre’s programme of events, I can tell you exactly which shows all the people in my area with a learning disabilities will be at. Because it is a FACT that adults with learning disabilities ALL love Elvis Presley and Abba tribute bands! Yes they do. Also all people with Down syndrome are very happy and smile all the time – especially when they are taken to see Abba tribute bands!

Call me a cynic if you like.

I worked for 10 years with a remarkable woman, who had a mild learning disability. I thought that I knew her quite well – her likes and dislikes etc. By chance one day in my car I put on a classical music programme. Almost immediately she began humming along to a Beethoven piece. I asked her how she knew it, and she said ‘oh my Dad used to play it on the piano. I love that sort of music’. I had had no idea. I began to take her to see some classical concerts – which she loved, especially pianists. She recognised a piece of music one time as coming from Swan Lake – I asked her if she had ever seen a ballet. She hadn’t, so we went – she loved that too. I asked another carer if she would like to accompany this service user to the ballet – ‘Ballet? – bally awful more like’ she said. 

Call me a cynic if you must.
I was guilty myself of limiting this service user’s choice. Not knowing a great deal about classical music myself, I generally suggested well known pieces of music, thinking that she would not enjoy more modern and perhaps challenging composers. In fact it was me that struggled with modern classical music. When at one concert there was some Benjamin Britten and Peter Maxwell Davies, she turned to me with shining eyes and said ‘I could have listened to that all night’.

Real Choice.