Oh the pain: Ethics

ethics

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.

Deciding future generations of SLTs

interviews

As an A-level student I recall visiting a number of universities for interviews. This was all part of the application process to getting onto a speech and language therapy course. I must admit I was a young 17 year old with not a lot of life experience. The interviews varied- most included an element of talking about why I wanted to be a speech therapist but some included a kinds of comprehension or listening test. Others included group tasks. All were rather scary and at the same time quite awesome.  To my amazement I was offered a place at UCL, city, reading and Leicester – argh how to decide. I was going to have to pay for my degree and was planning to choose the university closest to where I lived. I was the first cohort of students who would have to pay- across the board (all subjects). But just as we were undergoing these interviews we found out that the NHS were planning to pay our fees. This was great news!

 

Many years later I have started helping out with the entrance interviews at UCL. It is equally awesome to sit on the other side. The interviews I helped out on last year include the old “what will make you a good speech and language therapist?” question but also included service users as interviewees. People with communication difficulties- adults who have had brain injuries or strokes attended part of the interview. Potential students were asked questions by these people with communication difficulties. These service users were directly involved in deciding who would make a good future speech and language therapist. What a change. It’s a brilliant example of how service users can be involved in building the workforce who support them. It’s an inspiring example of how people with communication difficulties can be involved.

 

This initiative was driven by an NHS that would like to ensure they are training the right people to become the right speech and language therapists. It was formulated and implemented by a wonderfully creative group of speech therapists  and teaching fellows whom I admire greatly for their innovative and creative thinking. Often it is assumed that people with communication difficulties are unable to engage in service user involvement activities. This just shows that people with communication difficulties are brilliantly able to do this- with the right supports and strategies in place.

 

Sadly this is one of the last years that speech and language therapy training courses (and many other health professions training courses) will be financially supported by the NHS. End of an era. I do hope however that doesn’t change the way we try to hone and develop the profession to continue finding and training skilled and empathic therapists.

My guilty pleasure: systematic reviews!!??

https://www.flickr.com/photos/usdagov/14006925441
https://www.flickr.com/photos/usdagov/14006925441

As an undergraduate student I wrote my essays by hand and then trekked into uni to write them up in the computer room. I would then print my assignment and place it in the relevant pigeon hole. I did much of my masters by distance when I was living in Australia, and consequently submitting assignments electronically, listening to lecture casts and chatting on online forums seemed rather natural. Now I am doing my PhD – 18 years after starting my undergraduate degree things have changed even more. In order to do my systematic review of the literature I have a relative plethora of new-fangled software and databases I can use. Now I hear some of you muttering under your breath “but a literature review surely basically involves reading a bunch of stuff, what does she need all that for?” Ah well let me tell you, it seemed intimidating but as I have got the hang of it I have been experiencing the occasional serotonin high each time I do get it right. But that doesn’t answer your question. Let me see….

 

So, I have a list of databases to search. Each database allows you to download the masses of articles you have found. But each database has a different method of doing this. Fear ye not, just google how each one works and lo and behold you can create the rarest of file types (RIS files are currently my favourite). You can also download all the articles you have found directly onto a reference manager system such as Endnote. This seems like another massive hurdle but once you get the setting right, I swear the joy of seeing the article titles flooding in to populate the screen is rather addictive. That is when the serotonin high hits. I got it right.

 

I have around 10 databases to search. Once all the articles are saved in the reference manager you can check for duplications. Once the duplications have been eliminated that is when the reading begins. Oh what a thrill….I think this is where my next hit of serotonin highs will come in. I do love a list of inclusion and exclusion criteria. It is just so orderly and attractive. I have a beautiful table prepared where I will insert the number of articles I find in each database, and the number of articles which are eliminated after duplication and the number of articles eliminated after screening for the inclusion and exclusion criteria.  I will then create a prisma flow diagram  (basically a really nice flowchart) using revman.

What a guilty (nerdy) pleasure!

A care or a cure: What do the people want?

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I have just recently been to a fascinating talk by a visiting professor of linguistics from Cardiff (Professor Alison Wray) who spoke about her research around formulaic language in Alzheimer’s disease. One of the points she made is that there is a possibility that we could diagnose the risk of getting dementia in later life from a simple language sample when people are in their early 20s. Wow! Yet she also emphasised that many individuals would not wish to know this information. How many people would want to know that they were going to get Alzheimer’s disease in 30 years time when as yet we simply do not have any sign of a cure. Would you have children? Would you get a mortgage, health or holiday insurance? Possibly not.

Putting yourselves in others shoes is an important skill for an empathic clinician. Similarly this is an important aspect of research. Researchers should consider the value of their work to the participants themselves. Is the desired outcome of this research useful for people living with the condition? I have met many people with dementia who long for a cure. Equally many understand that this research is perhaps more relevant to their grandchildren and yet to be born great grandchildren. What they also speak about is research to support what helps them live with the condition. In speech and language therapy this seems to be about therapy that can help them live well with their families and continue to function in their current lives.

Clinical research can have a direct impact on the lives of people living with the condition. Asking people what research should focus on can assist in guiding and justifying your choices. And this really is not as complicated as it seems. As a clinician you have an enormous resource at your finger tips; your patients and their families. There is no reason you can’t ask your patients what they think!

This type of consultation is an entirely appropriate way of seeking input for small (quality assurance work, pre-development work) or large-scale research proposals (fully funded trials). It makes your work stronger and more relevant (and more likely to get funding). And it is not as complicated as you think. You could:

  • Use your clinical knowledge and experience of what people ask for or talk about in therapy.
  • Collect feedback (verbal or written) from groups or individual therapy sessions.
  • You can write a brief survey or questionnaire.
  • You can even contact previous patients by phone to ask them.
  • You can  go to support groups or charities to consult with people more broadly.

Be creative but ask. Don’t assume that as a clinician or researcher we know what is best for the people we work with. Population health research is important but so is person centered health research. Providing evidence based day-to-day care is as and perhaps at the moment more important. The NHS has limited funds and we need to spend it wisely.