Ethics: The bit they don’t tell you about!

So for those who haven’t ever submitted an NHS ethics application well phew…..it is a long old slog. Others of you who have – particularly if it was recently then you hear my pain. You may have read the summary of tips and hints I wrote. All I can think of is sharing as much of the experience as possible – I think I may need a virtual ethics emotional support group – for me!

My ethics application has felt like the bit of research people don’t talk about in advance perhaps similar to the parenting stuff people don’t like to talk about in advance either (eg the bit of pregnancy where I got super angry, the whole AWFUL embarrassing things children say in public and the stress of juggling school homework eurgh… I didn’t realise it would feel like MY homework).

Anyhow I am sharing my pain! Sure people said start the ethics application early- my supervisor, my funder and colleagues who had started their PhD ahead of me. So I did start earlier than I had intended- but now I realise I really should have started even earlier. It took forever! Tip no. 1: believe people when they say start early and then start as soon as humanly possible.

Then- don’t give up. It may feel like a test, or a torturous painstaking process to put you off research. However keep in the forefront of your mind that this is for the safety of you and your participants it really is. It is worth reading the horror stories of what previous (horribly unethical) researchers have done. This is why the process is there and it is for the good of the people. Tip no. 2: Remember it is for the good of the people.

Anyhow here I am 9 months later- see I told you it was like having a baby! Today I attended my research ethics committee meeting. The last hurdle- this group of 14 expert and lay committee members are the last hurdle to getting my ethics. So I went at my allotted time- 2.50pm and waited in an empty room until they were ready. And was then invited in for “questioning”. Tip no. 3: They are not mean, they are lovely and will give you helpful guidance and advice (Take in a notepad and pen to make notes- you will look attentive and interested in their feedback then, you also feel better clutching something!)

And the questions begin:
“This is a very interesting and worthwhile area of research”
(So lovely)
“Tell us a bit about it”
“Expand on this (consent)”
“Describe that process again (videoing)”
“Hmmm you may like to change this (images on a questionnaire and use of language on another questionnaire measure)”
“Great use of PPI”

Some frowning, mostly smiles I think!? Am I remembering this correctly? I may be delirious but I seem to have survived (just like giving birth). Tip no. 4: Remember your research is interesting and will be better for having as many eyes on it as possible.

Now I must wait a few more weeks (which seems an awfully long time!) for the final word….I will let you know what they say!

Endurance running and PhD upgrades.

I have to make a small confession, which I often do on my blog. I didn’t know I would have to do an ‘upgrade’ during my PhD until I was about 3 or 4 months into my PhD. So for those who don’t know- when you register for a PhD you are registered as doing a Masters of Philosophy. Around the end of the first year (or if your part time like me a little later) you must submit an upgrade report on your work to date and then attend a viva where you present your project and are asked questions about it. If the academics doing your upgrade feel you have done enough and you are online to achieve a standard of work adequate for a PhD you are ‘upgraded’. Consequently you are registered as a proper PhD student! Fantastic!

In the lead up to my upgrade I did my research- picking the brains of students in the years above, looking over their ridiculously clever reports and asking them about the types of questions they were asked. I wrote my report with lots of advice from my primary supervisor- who is an amazingly supportive person providing lots of really useful advice and helping me to refine my writing style. I think it is with her advice I am slowly starting to learn to write like an academic…maybe.

Yet this entire process reminds me of my marathon preparation process. I sought advice from magazines and other people who I knew who had run marathons – I collected a few training schedules and swotted up on appropriate diets. I even felt a few weeks prior to my event that I might be doing ok- I CAN run a marathon, I know what I am doing. No blisters or bonking for me. (FYI bonking is a technical term when you ‘hit the wall’  or you feel like you can’t go on).

Now, I sit in a lovely office full of lovely PhD students and of the 5 students doing their upgrades in my year I was the last. Ordinarily I am quite calm and collected in advance of a marathon or big interview. However being ‘the last’ meant I experienced and observed all the panic and paranoia that they all went through, in fact I found it was infectious. My worry started ramping up far too early. My husband always dreads my (normally brief) pre-marathon panic. It tends to go something like:

Me: “oh no why did we enter this marathon?”

Husband: “you wanted to”

Me: “But it is not a good idea- we are never going to make it, we are doomed, its going to fail…”

Husband: “sigh”

 

My pre-upgrade panic was similar BUT started much earlier and went something like:

Me: “why did I ever choose to do this PhD?”

Husband: “but just the other day you were saying you loved it”

Me: “but I am going to fail my upgrade, then everyone will know I don’t know anything and I am NOT cut out to be a PhD student”

Husband: “sigh”

 

My post marathon/upgrade conversations often seem just as silly (NB: I PASSED MY UPGRADE THIS MORNING YAY):

Me: “I passed”

Husband: “I told you so, well done”

Me: “no, you never said that! I didn’t know you thought I could do it”

Husband: “sigh”

And we all smile and breathe a happy sigh of relief….

Editing: a pleasure and a pain

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I once met a women who loved to edit; she described it as her raison d’etre. I don’t think I could hide my simultaneously horrified and also rather impressed facial expression. I suspect it is the same expression I have when my mother in law talks about cleaning. And yet my feelings towards editing my own work are rather similar to the feelings I have when contemplating cleaning; namely a mixture of fear and glee. And indeed there are quite a few big documents to edit during a PhD.

I tend to approach both tasks methodically. I start at the top and finish at the bottom with minimal deviations. Deviating from the logical course I have chosen tends to take up more time and thought- going up and down the house or a document, stopping and starting a task or train of thought are a waste of precious time. I find plowing through both easy and difficult tasks as they arise much more economical.

I find I must never shy away from a difficult task; be it scrubbing the oven or searching for additional appropriate justification. Both may take up a lot more time and effort than I would like but are just as important as quickly emptying the bin or correcting a grammatical error. In fact I value variety in tasks simply to provide a little respite. Sometimes I can enjoy a ‘light and easy’ task as a reward for completing the previous more tricky one. Trying to work on a series of really difficult things all in a row can become rather demoralising.

The truth is that towards the middle of these chores I start taking a bit of pleasure in the task at hand. And it always surprises me. I start to appreciate the sparkling, crumbless floor and the neatly justified lines of text. By the end I am sometimes a little satisfied and house proud!?!?

I have just finished editing a rather large document- my upgrade report. In order to continue on my PhD journey I must demonstrate my achievements to date. First this report and then a viva in a fortnights time. This is all a routine part of being a PhD student. Next up is writing my presentation for the viva. EEK! Wish me luck.

Oh the pain: Ethics

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I recall from what seems to be a dim distant past being advised to get started early on my ethics application for my PhD project. It was in fact the NIHR who put this in the letter when they first wrote to award me my fellowship. I confess that it didn’t particularly register this point as I was rather distracted at the news of getting the fellowship. And leaving work. And starting my PhD. At UCL! And getting on with the first stage of my research- that did not require ethics.

Then last summer my supervisor and I decided I needed to commence work on my ethics. We thought it might be useful to tackle it a little earlier than planned on my epic Gantt chart. Now I have run a marathon. Yet this feels rather like running a marathon and being told half way through you have a second marathon to run that no one had previously cared to mention. Yes, ethics is a mammoth endurance test.

As speech and language therapist in the psychology and language sciences department there was little guidance in the art of applying for NHS ethics. And although I am not quite finished I feel I need to put some things down on paper for others who may choose to cross the jungle. So here are a few tips and hints from my journey so far:

– It’s a massive document (bigger than your grant application most probably) so prepare yourself.

-If you know ANYONE else who has recently done their form ask for a copy- it will be invaluable.

– It is littered with danger zones: consent, data transfer, risks to patients. You need an eye for detail- it is useful to have someone helping you who has this skill.

-If you are working with people with dementia and you expect most people to have capacity when they do your study then do stress this in your application.

-If you are working with people with dementia and they are likely to progress during the course of the study stress that you will check their decision-making and consent repeatedly throughout the study.

-Refer to the Mental Capacity Act (2005) and the Code of Practice (2007) – it is really helpful to use this when writing about the consent process, particularly when considering whether it is in a persons best interest to participate in research and asking for a consultee to consent on behalf of the person.

-If you are working with people with communication difficulties create a ‘communication friendly’ Participant Information Sheet and Consent Form with input from people with communication difficulties themselves and mention they have helped in your application.

-Try to think of ways you could electronically transfer data safely rather than going to collect it. You may benefit from talking to your digital curators / data managers within your institution or even the Information governance people at the NHS sites.

-Get in touch with your local CRN- clinical research network. They should be able to support you in making your study work on the ground in terms of local buy in. Speak to them at some point before you submit.

-Keep going and don’t give up. You will get there. In fact you will also find it useful in developing and guiding your thinking around your methods and the study itself.

I am planning to join forces with another researcher and PhD student to write a few more tips and hints. I will keep you posted.

Exchanging notes on capacity

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Not that long ago the Dementia and Mental Health of Older Adults CEN (previously the psychiatry of old age CEN) wrote an article on the roles an SLT may take on when dealing with issues surrounding the mental capacity Act (Devereux et al, 2016). These were developed from a workshop we ran at one of our study days where we discussed the breadth of our roles and the responsibilities these roles may be accompanied by. The bulletin magazine (Royal college of speech and language therapy practice magazine) article in July 2016 summarised these discussions.

More recently another group of clinicians (Bamford, Dixon, Mather et al, 2017) have responded to this with another article in the Bulletin magazine. This article builds on what was previously written by delving into the roles and providing clinical examples of where SLTs have acted in these roles in response to clinical situations. The article showcases some wonderful examples including a case where the SLT acts as an assessor in examining the decision making capacity of a young women with a learning disability around using the Internet. The authors also provided a great example of the role of the SLT as a trainer; they describe two training sessions delivered to a group of 40 social workers on the role of the SLT. The authors emphasise how this type of training can support other health professionals to engage with SLT support more appropriately in terms of our role in assessment and best interest decision making.

How wonderful that we as a discipline can have this conversation. When health professionals do not feel competent in an area of practice they are less likely to engage In work in this area. SLTs are starting to feel more competent in this area. SLTs are having more conversations, doing more research and providing more examples of great practice.

The Dementia and Mental Health of Older Adults CEN (previously the Southern Psychiatry of Old Age CEN) are planning to do more learning around advance planning. I feel this is an area where SLTs can really support people in engaging in advance planning, for example creating appropriate documents and tools to support people to express their wishes and preferences. I look forward to hearing the next stage in the debate!

The smaller joys of a career in research

https://www.flickr.com/photos/bethscupham/7362406262
https://www.flickr.com/photos/bethscupham/7362406262

Warning: gratuitous listing of what makes being a PhD student pretty cool

If you have been considering a career in research and are currently working in the NHS then do read on. I have now been doing a PhD for just over a year and have been surprised by the smaller pleasures I have discovered on route. These are generally perks no one had previously mentioned to me. This may be what makes them so nice:

1. Independent working
This sounds ever so obvious but really I hadn’t anticipated what this meant. I have a wonderful relationship with my supervisors. Basically they are there when I need them but they trust I will get on with things. I keep them informed of my comings and goings but they are comfortable for me to do what I need. One of the great bonus’ here is that if my children need me I can be there for them without losing out on work hours or feeling terrible for cancelling a patient’s appointment. For the most part I can shift my hours to when is convenient for me.

2. Christmas
For the 14 years prior to embarking on a PhD I have worked in some way over every Christmas and certainly every Easter (although unlike many nurse and doctors I have not had to work as an SLT on Christmas Day itself). In order to apply for a day off I would previously have to apply many moons in advance, often stating a reason for needing the day off and then this would be considered by the senior team before being put forward to the manager for approval. This painful process was not without good reason- ensuring patients needs are met is the priority for the service. Now as a PhD student I am amazed by the fact I don’t have to work over Christmas or at least I can work from home if I so choose.
3. I am valued
I didn’t really anticipate that other very senior members of the department would consider me an expert. I find there are times when people defer to my knowledge and experience as a speech and language therapist who specialises in dementia and mental capacity. I feel valued by the department.
4. Development is key
Previously I have had to ask my manager every time I wanted to do any courses or attend any talks. Developing myself as a researcher for a future career beyond my PhD includes looking out for opportunities and taking them! This is also about developing new skills and collecting knowledge to apply to current and future research. I confess I find this rather addictive.

In short if you have written a New Years resolution to try to do some research or embark on further study – do it. There are hidden benefits that can improve your working life.

Writing a journal article – how hard can it be?

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Now writing for an academic audience has been a source of fear for me for a few years now. Writing the illusive peer reviewed scientific journal article seems like a rather massive challenge. And I confess writing to this level has never come easy! I was told on my undergraduate course that I needed to work on this area- I am too wordy and descriptive. So I went on a course this week. As you would expect the course did not write my article for me- they just affirmed my current practices and gave me a few tips I thought I would share.

  1. Before you even consider the key idea/message of your article choose a journal. Ideally one you know and if you don’t know it find out about it. This means a) find some previous articles of a similar style (RCT or survey or systematic review) ie confirm they publish the type of thing your going to write and 2) find out about the editor – what do they like, what have they said in previous editorials, what do the author guidelines say!? If your unsure that this journal is right for you- email the editor!
  2. Now the author guidelines may tell you a lot but should they not quite fill in all the gaps you can use those articles you found- how long are the titles? Is there a colon in the title? How long is the intro/methods/results/discussion in terms of words or paragraphs? What purpose do these paragraphs serve (intro/background/aims/summary etc).
  3. What do you want the main message of your article to be? What do you want the recommendation or lasting thought to be? This doesn’t have to be the title- but it could help you structure everything else to lead up to this most important point.
  4. What are the key words for your study or article? These would probably work well in a title- shuffle them around and see what you get. Take time – no need to decide now – come back to this a few times but make sure it matches the journal you are aiming for (see point 2 re how many words in a title).
  5. Decide who will be the authors and in what order. My suggestion is to talk it over with your supervisor – be open about it and others will probably advise you at this stage. Who is helping you out, with what. Can some fall under acknowledgements?
  6. Start writing out your article- either as a spider diagram, a mind map or some kind of diagram. In the past I have just written out bullet points on a word document with sub-points under them. Decide how many paragraphs you will have in your introduction (refer back to the number you found in those articles in point 2 and what the theme was of each). So lets say you will have three paragraphs, decide what each will do- the first will provide the background, the second the current evidence and the third the gap and where your study fits. Try to draw out the key words for your project into each of these paragraphs. Once you have the key words down, perhaps try to draft a few sentences.
  7. Do add references as you go along- use a reference manager. BUT check your journal guidelines. How many references are allowed/typically used (refer back to other articles). And what style?
  8. Review your sentences- make sure they form a cohesive argument. Try not to make more than one significant point in each paragraph or it will get confusing.
  9. Review the work you have done again.
  10. Ask for help. Ask someone else to re-read it and make suggestions.
  11. Review it again
  12. Write the abstract last- Or if you do choose to write the abstract first, come back and re-review the abstract after you have completed the bulk of the article. You may need to re-write it again now.

So, even with all these pointers it seems a bit easier said than done. I don’t know anyone who has not at some point struggled with writing. I think this is normal. And everyone is different. I have to force myself to sit and just get on with it. I have to give myself a good talking to and just do it, and accept that I will need to review and edit and rewrite it about a million times. This is just all part of the process for me.