We’ve discussed before on this blog the possible benefits of public/patient involvement in research, and how it might be done, but in this guest post from Jemma Cleminson we get an insight into the challenges of doing it in real life.
With many of the big funders of research now expecting involvement of patients and the public (aka ‘PPI’) from the earliest stages of research, right through to dissemination of the results and beyond (and quite rightly too!), it is vital that we recognise and acknowledge this increasingly important area. Involving PPI from an early stage can help to ensure that your research is relevant, makes sense, and is useful for the people for which it is intended to benefit.
The world is full of people who will tell what rules to follow when writing, and include some frankly made up rules about what not to do. Many of these should be ignored and dismissed as the worst sort of control freakery. I’d argue that there is no such thing as incorrect writing – because if ee cummings is wrong, I don’t want to be right. There is, however, bad writing, which I would define as writing which obscures meaning, or more simply just makes your piece harder to read. This post includes some things that I see lots, and that I think worsen writing. more…
The situation is clear. The child has an illness which is very likely to end their life – and soon – in days, not months or years. They may be hooked to a ventilator, drizzled with inotropes, or osmosed. The health care team is talking – once again – about the outcomes and what we can, should or will do.
Do you recognise this?
Do you recall how people spoke – not the ~mab, the pressor or the particular hospice name – but what the emotional and moral content of the discussions were? Can you recall if that varied between professional groups & experience of those folk? And if there were clashes between how people felt the actions should flow, against how they were made to act?
This is the question that has been investigated by a new systematic review in the ADC, drawing together original papers who have enquired about ‘moral distress’ in NICU / PICU
Take the ‘policy’ being made on your unit – guideline implementation, the ‘how we do stuff’ of everyday practice, the business case for a new ‘Where’s Wally?’ book pre-cannulation – and think how you might want to be given the evidence that underpins the actions. more…
Here’s idea that emerges from realist reviews – demi-regularities.
This term implies common, frequently reproduced behaviours / patterns that get seen in human activity, and can emerge in the setting of a realist review as theme-type things that are seen across different studies. They are the ‘broad lessons’ and ‘usually happens like this’ findings.
There’s a not-so-new kid on the systematic review block that seeks to cogently and comprehensive look at if, why (or why not) an intervention ‘package’ works in practice. They are ‘realist reviews‘ which, in brief, take a slightly different idea to how things work than the standard medical researchers might.
The reviews aim to unpick the relationships between a programme of intervention (e.g. approaches to substance misusing parents of younger children), the mechanisms of action (e.g. how people think, act and believe stuff when they are approached by programme elements, the choices made), how they are contextual (e.g alter if you’re in or out of a house you can stay in), and the outcomes (e.g. school attendance, child growth, police involvement). They undertake this by following a structure similar to many systematic reviews; they define a clear question, seek widely for appropriate evidence, weigh the potential strengths and weaknesses of the evidence, synthesise it into an understanding of stuff and provide messages for using the research. The synthesis comes from a stated theory, often rough-cut, about how the intervention might work; what the mechanisms may be and how contexts may alter that.
For no particular reason I can think of I bumped into this RCT of “Intraurethral Lidocaine for Urethral Catheterization in Children: A Randomized Controlled Trial” and thought, initially, “Well that’s a waste of money and effort and quite unreasonably uncomfortable for the poor little things that got un-anesthetised”. (My very first job was on an adult urology firm, and after popping in a few more three-way irrigation catheters than anyone should need to do I came to the vicarious experiential position that anaesthetic would be a good thing for catheterisation.)
But I read on.
Turns out that compared with just plain, un-medicated lubrication, popping in some anaesthetic doesn’t make it better. Indeed, it might make it worse – as it stings when the lidocaine goes down – and the catheter is equally as uncomfortable.
Which makes me wonder – what have you turned up in your reading / learning that made you question perfectly sensible assumptions?