The Better Conversations with PPA randomised controlled pilot study protocol article: A blog summary

We have developed a communication partner training program for people with Primary Progressive Aphasia (PPA) and their conversation partners called Better Conversations with PPA (BCPPA).

 

This article describes a randomised controlled pilot study (that is currently underway) comparing BCPPA to no treatment.

 

This is the first randomised controlled UK pilot study of a communication partner training intervention for people with PPA and their families.

 

The BCPPA program and training materials will ultimately be made available to speech and language therapists (SLTs) via UCL’s public e-learning platform, alongside Better Conversations with Aphasia (BCA) at https://extend.ucl.ac.uk/.

 

Conversation training interventions (also known as communication partner training) have been widely used by SLTs working with people with PPA across the UK. At present there is little evidence to support their effectiveness, highlighting a gap in the research literature. BCPPA has been developed to meet the needs of people with PPA and their families using data collected from a UK wide survey of SLTs working with people with PPA, a systematic review of the research literature on functional communication focused interventions for people with PPA, advice from expert SLTs who participated in a Nominal Group Consensus exercise to prioritise the content of the program and from focus groups held with people with PPA and their families. This article describes the protocol for a randomised controlled pilot study that is currently underway comparing BCPPA to no treatment. The study aims to recruit 42 couples to participate in the study over 18 months, across 7 NHS sites in England. Participants who meet the inclusion criteria will be recruited by local speech and language therapist from their current caseloads. These SLTs have been trained to complete the pre-intervention measures and deliver the BCPPA intervention. If the potential participants consent they will participate in a series of outcome measures including making video recordings of themselves having conversations and a series of questionnaires on quality of life and the impact of the communication difficulties (both the person with PPA and their partners participate in these), additionally the person with PPA completes a language assessment with their SLT. Once this has been completed the participants are randomly allocated to receive either the 4-week BCPPA treatment (4 one-hour therapy sessions, delivered once per week), or no treatment for the same period. After this junior researchers (blinded to what condition the participants have been randomised to) will be seeing the participants to complete the same battery of measures. This should take a total of seven weeks. The local SLTs delivering the intervention have been asked to video and audio record themselves delivering all the intervention, so that the fidelity of intervention delivery can be evaluated. The local SLTs will also complete an adherence questionnaire, and the participants will be asked to complete an anonymous feedback questionnaire after every BCPPA therapy session. All the data will be collected and analysed to provide information about the most appropriate outcome measures, acceptability of randomisation, recruitment and retention of participants, fidelity of treatment delivery, sample size requirements and inclusion criteria for a future full trial.

 

Watch this space for our publications on the results of the study! We will be publishing them in peer reviewed journals, but will be sharing them with groups such as the PPA support group (branch of the Rare Dementias Support Group based at UCL; http://www.raredementiasupport.org/) as soon as we can!

 

 

And here is the link to the full article:

 

Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study. Pilot and Feasibility Studies, 4(1), 158.

 

https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-018-0349-6

 

 

 

Advertisements

A social media approach to research dissemination: the stumble.

I recently received the loveliest email from a speech and language therapist who was asking for advice on applying for PhD funding. One of the things she mentioned was how much she liked my approach to dissemination – the use of twitter, blogging and podcasting. I am so pleased that I appear to be presenting a logical, well planned approach! But in the spirit of a recent podcast I participated in on the topic of imposter syndrome I am going to admit that it really isn’t. I opened a twitter account for all things “work related” just before I started my PhD. I wasn’t convinced. My oldest friends who all work in media and the arts thought it was highly entertaining that I was embarking on this lifestyle choice. They consider me something of a tech-heathen. I am one of those annoying friends who doesn’t reply to texts, emails or Facebook messages for days, by which time the event has passed or the conversation irrelevant. I tend to lurk on Facebook and never post anything, scrolling through other people’s posts as a distraction from some tense TV program. So, I didn’t anticipate taking a liking to twitter. But I have to say I have found it rather more interesting than Facebook. I realised I could have conversations on speech and language therapy (one of my favourite topics) with like-minded souls from across the planet, I found interesting articles and it all fired my enthusiasm. I now find twitter provides me with community, a community that encourages me and excites me and drives me to share my work. I have to advocate twitter to the non-believers now. Just come and take a look, lurk and look and then make a decision.

 

I then went to a rather useful talk on social media at an NIHR meeting just two months after I started my PhD. The speaker was advocating the benefits of blogging. So, I thought that perhaps blogging might give my poor husband a rest. Rather than assaulting him with my ideas and reflections on research, dementia and being a speech and language therapist I thought that blogging might be a useful method of sharing (venting) my experiences of being a clinical academic, and might even reach others, paying forward some of the hints and tips. Disseminating information on the study I am doing was of course the top agenda for taking up this route. It felt much more accessible to write regular blogs (freely available on the internet) rather than relying solely on publishing journal articles (in journals that sadly some NHS trusts may not subscribe to) that may be less accessible for clinical speech and language therapists. Blogging has opened up other avenues too. I have been invited to blog on the RCSLT website, on the Talking Mats website and on the NIHR website. I was even shortlisted in the NIHR 2017 Let’s get digital! Competition, and although I didn’t win the traffic to my site increased massively. I also like to advocate blogging- it is so nice to be able to write something down, in a conversational style and realising you are reaching people who may otherwise not be able to access this information. You don’t need to blog lots, but regularly. And there are so many free platforms about now too.

 

On my twitter travels I recently happened upon the @dem_researcher twitter handle and website led by the NIHR. I think they were asking for blogs and I asked if I could submit a blog. Somehow, I managed to convince them that I could send in regular blogs (monthly) and now I write for them too. I also spotted tweets inviting people to do podcasts for @dem_researcher. And so, I stumbled into participating in two podcasts. One on the topic of imposter syndrome (released this week), the other on the topic of my own project!!! (released a couple of weeks ago). I really enjoyed the podcasting. Since the release of the podcast on my research study I have received emails from a person with PPA and their partner in the US, and a speech and language therapist in New York, asking about the intervention I have developed. What an amazing platform.

 

If I were asked about my social media approach I would have to explain (as I have above) that it has been more about seeing an opportunity (incidentally) and having a go. There have been other things that haven’t worked out (twitter conversations that have petered out) but lots that have worked out, or may be building something even more exciting for the future (I am involved in setting up a clinical academic group for speech and language therapists- who know where that may lead).

 

So what’s next? I haven’t yet used Instagram.…(but I am open to trying at some point).