Hello, my name is Niamh. I have joined the LUNA team as a post-doctoral research fellow, and am funded by the Research Sustainability Fund in the School of Health and Psychological Sciences.

I bring experience of clinical practice and aphasia intervention research. I was a senior specialist speech and language therapist in stroke rehabilitation in the NHS before a researcher on aphasia therapy research projects. Most recently I have completed a doctoral studentship at City, University of London developing an intervention and testing its feasibility and acceptability. I have experience of working within the medical research council’s framework for developing complex interventions to move interventions from theory-based ideas towards implementation into clinical practice.

I am thrilled to have joined this large, vibrant, international team of researchers with ambitious plans. The LUNA project mission statement outlining the commitment to inclusion and coproduction with key stakeholders and its record of publishing with stakeholders as co-authors are some of the reasons that I feel privileged to work with this team.

We are delighted to announce to our newest initiative: MOON – MOving On with Narrative.

We know that connected speech is complex not only for stroke survivors with aphasia, but also for speech and language therapists to assess and treat. LUNA is an innovative treatment project designed to help with these challenges.

This Autumn, we will be launching MOON – MOving On with Narrative. MOON is an online module designed to help busy clinicians analyse connected speech. The course will aim to give speech and language therapists the knowledge, skills, and confidence to embed discourse analysis into their practice. The course will show how you can use discourse analysis for both target identification and outcome measurement.

MOON will cover the current evidence base, and teach how to elicit, transcribe, and analyse discourse. There will be plenty of real examples from LUNA participants, opportunities to practise, feedback and reflection. The course will use tried and tested methods as well as time-saving tips. MOON can contribute towards your continuing professional development. Initially, the course will be available to Speech and Language Therapists based in the UK, but if there is interest, it can be rolled out internationally in the future.

Carla Magdalani, formerly a LUNA assessor, is helping to develop this online course. Our thanks to the Higher Education Innovation Fund (HEIF) at City, University of London, for supporting this initiative. Thanks to the Stroke Association, too, for their generous funding for phases 1-5 of LUNA.

So, how do you like to learn?

In Spring 2020, we ran a short questionnaire to understand SLTs’ views on what helped most when learning about the evidence base. We were so grateful that 37 clinicians took part, and we used this information to help produce some resources on the City Access – Resources for Aphasia (CARA) Hub – see below for more information on this!

We think that what clinicians told us then probably still holds true today, and we will use these principles to guide us as we develop MOON, but given how much the world has changed since 2020, we would love your input in our Twitter poll next week. It’ll be open for 7 days from today until Monday 4th April.

Here is a snapshot of what clinicians told us back in 2020:

What do you use to review the evidence base? 

• 1st – Reading research literature
• 2nd – Supervision discussions
• 3rd – CEN events

How effective do you find the following for developing knowledge, skills, and confidence? 

• 1st – Reading research literature 
• 2nd – CEN events 
• 3rd – Journal clubs (in person and virtual) and
• 3rd – Discussing research papers in team/CPD meetings

In your experience, what most effectively brings about a change in practice? 

• 1st – Having the opportunity to practice a skill as part of, or following, training 
• 2nd – Scenarios encountered in clinical practice 
• 3rd – Receiving feedback from patient/support networks and
• 3rd – Having time dedicated to developing clinical skills

Gracious it has been months since we last shared news on our blog. It’s been busy times for everyone everywhere. We hope people are as well as possible and managing as best as possible. Here’s some news to brighten your Friday: we finished therapy sessions in March; we finished final assessment sessions in April; we finished story transcription also in April (more than 200 stories…); and we finished post-therapy qualitative interviews in May. We are done done done with collecting data. And we have many people to thank for helping us get to this point.

First round of thanks goes to our marvellous 28 participants and family members who’ve been on this journey with us since June last year. We are a feasibility trial, so the questions are can we do this research, will people take part and stay the journey with us, and what do people think of the therapy and the process? It’s looking pretty positive in this regard which is terrific and we acknowledge the enthusiasm, commitment and positivity of our participants in this endeavour.

Next thanks go to our incredible therapy team – therapists Sarah Johnston, Richard Talbot and Gabriella Procida – and student therapists Sarah Ajrullah, Tarisa Tan, Zain Alabbasi, Molly Garfoot, Harry Smithson, Annie Otalora-Garcia, Rosie Flynn, Ann Mason, Taru Launiainen, Hanka Al Saidova, Cemaliye Birdane and Rosie Sweetman. They’ve innovated in most creative ways to deliver a complex discourse intervention through Zoom and reach into people’s kitchens, lounge rooms, and offices to help participants improve their storytelling skills. Hats off to all of your for your dedication, problem-solving, and the fabulous therapy spaces that you’ve created with participants.

Up next are Carla Chynoweth and Lin Cockayne (assessors) and Rachel Barnard (qualitative interviewer), our staff who collected the super important stories, clinical assessment and patient reported outcome measures, and interview data that will help us judge what people thought of LUNA, whether we chose the right assessments, and whether there are any indicative benefits (although the sample is small). You have invented ways of helping people feel comfortable and at ease with assessment and interview at a distance that did not initially seem possible – and have done this in a manner which is rigorous and reliable. We applaud you.

We simply must must must thank our volunteer transcribers – City SLT students – who transcribed and checked umpteen personal stories from across our 28 participants. They include six of our student therapists named above – Sarah, Molly, Harry, Annie, Rosie F and Taru – as well as 20 further transcribers: Bernadine Buckley, Ella Thorne, Janany Dayalan, Olivia Hogg, Frances James, Lisanne Go, Alice Dunbar, Hannah Harvey, Julia McGlashan, Marcus Truin, Victor Piotto, Kirsty Harris, Tansy Brice, Nicola Rowland, Shannon Given, Bhavisha Vekhria, Madeleine Rowlands, Rebecca Jacobs, Leema Miah, and Daniella Stead. You followed protocol with high attention to detail and several of you came back for repeat transcribing, so it can’t have been as painful as we imagined! You told us you learnt so much for the opportunity, we thank you for this gift of your time and contribution.

And last but by no means least, huge thanks to our super project manager Kate Swinburn who meticulously monitored all the data collection over the last 11 months and checked, prompted, and nudged us all to ensure our data is sitting in superb shape. You also skilfully supported staff and students when we’ve had some wobbles, we have so benefited from your expertise.

Kate’s also had the privilege of closing the project with each participant in ‘closure interviews’ and hearing people’s thoughts and views – we leave you with some of their reflections:

LUNA best thing ever happen to me

LUNA project is really wonderful … thank you from the bottom of my heart

Friends noticed my speech improved…before it was one word answers now it’s sentences

Awesome

Guest-edited blog from Corinne van Rheede, 2020 graduate from City, University of London

Phase 4 of the LUNA project explored the feasibility of training clinicians to accurately and efficiently analyse aphasic narratives. Clinicians attended a training day at City, University of London in July 2019, and were trained in six analyses – two at word level, two at phrase level, and two at discourse level.

My research project (completed May 2020) focused on the discourse level, specifically, story grammar analyses. I looked at what errors clinicians made on analysing the test narrative (transcribed spoken personal narrative). Looking at their responses, I tried to find patterns and to think of possible reasons why clinicians made particular choices. I explored completion time and errors made as well as the effect that demographic variables such as NHS Band, clinical experience, frequency of use of discourse analysis in the field, and reported self-confidence in performing discourse analysis played on errors made.

I made a classic newbie error and overwhelmed myself in reading many unrelated papers in an attempt to discover exactly what personal narrative and story grammar are. In a nutshell: story grammar is the organisational, structural features of narrative discourse. Nine elements form a vital framework on which information is ‘hung’. Much of our daily communication takes the form of personal narrative and involves story grammar – think ‘telling your friend what you did over the weekend’. Now in aphasic narratives, many of these elements may be missing resulting in shorter, less cohesive narratives that have errors of syntax, semantics, and morphology, and are syntactically simple. Basically, this results in your friend having difficulty in understanding your story because pieces are missing. Story grammar is considered a “robust” measure (Pritchard et al., 2018), which means clinicians can be confident in knowing that analysing and treating this will give reliable, measurable outcomes to their clients. Another benefit is that story grammar analysis takes a few minutes and needs no fancy assessment protocol.

It would have been great if there was a clear-cut reason for why participants made errors, but with nothing glaringly obvious, I wondered what could be changed. This caused another bout of research reading, this time on andragogy – the art and science of adult learning. Training consisted of a teach-practice-discuss-test format, which appears to have been quite successful. Participants may have achieved better results if they had more training time and more opportunities to practice on different aphasic narratives, consolidating their learning. When telling a story the words we use can affect how the listener hears the story (Boyle, 2014), and it may be that participants focused on divergent phrases and tangential speech, missing the salient point of the story. In the future, training, examples and explanations of certain elements would need to be more precise to reduce ambiguity and achieve better overall results.

My takeaways from this research project were many, so I’ve picked two which struck me most:

1. Training matters! – Clinicians benefit from training in order to successfully apply aphasia-specific skills and multilevel interventions.
2. Standardising outcome measures – researchers need to use the same outcome measures as clinicians, service users and even other researchers.

Quick, simple to understand and to use, practical – that’s what going to make a difference in the lives of our clinicians and ultimately our service users.

REFERENCES:

Boyle, M. (2014). Test–Retest Stability of Word Retrieval in Aphasic Discourse. Journal of Speech, Language, and Hearing Research, 57(3), 966-978.

Pritchard, M., Hilari, K., Cocks, N. and Dipper, L. (2018). Psychometric properties of discourse measures in aphasia: acceptability, reliability, and validity. International Journal of Language & Communication Disorders, 53(6), pp. 1078-1093. doi: 10.1111/1460-6984.12420

Please note – because these findings are in the process of being written up for peer-reviewed publication, we can’t release any more specific story grammar analysis findings at this moment!

LUNA update: going strong

Dear LUNA followers, we apologise we have not blogged in a while. We have been busy. Here’s a bit of an overview of what we’ve been doing. We hope it finds you all well. From Dr Kate Swinburn, LUNA Project Manager

During some hectic weeks in June, July and August, the LUNA team successfully recruited its full complement of 28 people with aphasia to the 10-week treatment programme. We have a lovely range of participants: 16 men and 11 women, ranging in age from 48 to 83, from one year post stroke to 12, and across a variety of occupational and life backgrounds: company directors, lorry drivers, secretaries, dancers to name a few.

And my goodness it’s been quite a merry-go-round … first up – preparation. Carla and Lin (our assessors) have clocked up over 400 hours of assessment (so far), documenting and scoring with 100% accuracy – we’ve checked! Sarah, Richard and Gabriella (our LUNA therapists) and our 12 City student speech and language therapists have studied the LUNA treatment and the 297 page manual…. Our advisory group members with aphasia have supported therapists and students to get to grips with LUNA therapy over Zoom.

With training completed, LUNA took off in a whirl of random allocation, twice weekly treatment sessions with therapists and students, as many challenge (i.e. homework) tasks as possible, documentation, handover records passing between therapists and students, recording their successes, observations, suggested improvements, and so on – the project was truly underway. Quite a circus!

At the time of writing, the LUNA team have completed approximately more than 50 technology checks and technology ‘refresh sessions’ with participants (Zoom is not straightforward for everyone but nor is it insurmountable and practice and support have been integral to people’s success), 86 assessment sessions, and 352 treatment sessions with only 4 sessions missed due to two participants’ ill health. In spite of COVID and all the challenges that everyone is up against, things are fortunately going according to plan. A mighty cheer out to all our participants managing Zoom and their therapy in various states of lockdown circumstances, and to staff who are doing exactly the same.

Thanks for your interest in LUNA.

Dr Kate Swinburn, LUNA Project Manager

We are delighted to welcome our final two staff to the LUNA team – Richard Talbot and Gabriella Procida. They join Sarah Johnston, as research therapists delivering LUNA therapy to 28 people with aphasia between now and April. You can read a little about their backgrounds below, and about the whole research team here.

Richard Talbot

Twitter: @rtslt

Richard is a speech and language therapist and researcher joining the LUNA team as a therapist for the final phase of the project. He previously contributed to the therapist co-design phase. Richard has over 10 years clinical experience in a variety of adult neurology settings. He currently works part time in community rehabilitation in Sussex, alongside the post on the LUNA project at City, University of London, and is the Newsletter Coordinator for the British Aphasiology Society Committee. Richard was previously a project manager on the EVA Project also at City, and continues to support an early adopter initiative to promote uptake of the technology in clinical practice. The opportunity to continue to be involved with linking research and practice was a key motivator in applying for the therapist role on the LUNA project. Richard is excited to be able to learn from and contribute to the development of therapy co-designed to make a meaningful change to the communication of people with aphasia through telling their own story.

Gabriella Procida

Gabriella qualified as a Speech and Language Therapist from City University in 2009, following many years working in the charity sector. At City, she realised very quickly that her passion lay with working with adults with neurological conditions. Since then, Gabriella has worked in a number of roles in the Guy’s and St Thomas’ community neuro rehab service across Lambeth and Southwark. Here, she developed special interests including supporting people living with motor neurone disease; improving quality of life for people with dementia living in care homes; and the use of technology to support communication. Working in the community, her focus was very much on helping people get back to their real lives – with meaningful, everyday communication a key part of that. The LUNA approach to aphasia really struck a chord with Gabriella – telling our personal stories is the stuff of life, and how we tell our stories is central to who we are. She is very excited have the opportunity to help develop a practical tool for therapists to use in this key area of clinical practice – and which has the inclusion of people with aphasia at its heart.

We are coming to the end of our 3rd week of recruiting for LUNAonline. We’ve had terrific email, phone and Zoom conversations with people with aphasia, family members, speech and language therapists, and group coordinators! Don’t stop though, keep that interest coming. We will continue recruiting in July and August, and then we will be closing doors, so please contact us earlier rather than later.

We talked to our LUNA advisors this week about why someone might want to take part in LUNA research. Our advisors are people living with aphasia who have had LUNA therapy themselves, as part of our pilot work. Here’s what they had to say:

Drumroll. It’s finally official. We’re announcing LUNAonline!

COVID-19 certainly stopped us in our phase 5 recruitment tracks, and we’ve spent the last 12 weeks re-thinking, adapting, planning and preparing.

We’ve noted with great interest how rapidly our clinical colleagues needed to adapt and have embraced tele-rehabilitation, and how swiftly and successfully voluntary sector groups supporting people with aphasia have shifted to online and alternative support systems.

We’re delighted now to share our news that LUNA is moving online. Yes, that’s right, the entire therapy project will now be delivered over Zoom.

Further news is that we can recruit now from anywhere in the UK (providing there’s good internet connection!) and we are piloting the therapy with everyone who comes into the therapy project (up to 24 people with aphasia).

We are recruiting now (June, July, and August) and spaces are limited, so please get in touch with us if you are interested. People can make a direct self-referral by emailing us at the address listed at the bottom of this blog posting.

Here’s some information about our study

[if you click the hyperlinks below, they will take you to other information on the internet about our project – so you can find out more about LUNA]

LUNA is a speech therapy research project for stroke survivors with aphasia.

The research project is run by researchers at City, University of London.

The research is funded by The Stroke Association.

We have worked in true partnership with 4 people with aphasia and 4 speech and language therapists to develop this new therapy.

We hope this makes the therapy as meaningful as possible.

The therapy is designed to help people tell personal stories again – many people with aphasia find it hard to put words and sentences together to share stories and experiences they have had in their life with other people.

The therapy will last 10 weeks and will involve 2 sessions per week of 60 minutes.

There will also be some assessments and questionnaires before and after the therapy.

There will also be an interview after the therapy to find out people’s views of taking part.

Here are some questions to check whether LUNAonline will be suitable for you

These are for the person with aphasia:

1. Have you had a stroke more than 12 months ago?
2. Do you have aphasia following the stroke?
3. Did you speak English before your stroke? (the therapy is in English)
4. Have you finished NHS speech and language therapy?
5. Do you have a computer, laptop or tablet at home?
6. Do you have an email address, or someone close to you (for example, family member) who has an email address?
7. Do you have a good internet connection in your home?
8. Are you happy to download Zoom on your device? (it is free – we have some materials to help you learn how to do this and also use it during the therapy)

If you answered YES to all of the questions, LUNAonline could be suitable for you.

If you have severe aphasia or very mild aphasia LUNAonline is not suitable for you.

Please get in touch with us to find out more about the project and chat with our team. We will help work out whether LUNAonline could be suitable for you.

Email us on luna@city.ac.uk

We would love to hear from you!

Another week and another welcome! Our 4th new staff member – Lin Cockayne – has started with us on LUNA. Read more about her background below.

Lin Cockayne

Twitter: @LinCockayneSLT

Lin is a Speech and Language Therapist joining the LUNA team as a Clinical Assessor for the final phase of the project. Lin qualified with Distinction in Speech and Language Sciences from UCL in 2018 and since graduating has been working with Aphasia Re-Connect delivering peer-led community aphasia groups across London. She previously volunteered and worked for Connect – the communication disability network and has long been passionate about supporting people with aphasia to participate in every day conversations, conveying who they are in ways that are personally relevant, meaningful and fun. Lin was attracted to LUNA’s exciting new approach and its focus on enabling people to express their personal stories in their own words and language, and connect with others in a richer, more comfortable and more meaningful way.

We are really pleased to announce that Dr Kate Swinburn joins the LUNA team this week! Kate takes up the position of Project Manager. Read about Kate’s background below. We are thrilled to have her onboard, and looking forward to starting our next and final phase of LUNA this week.

Dr Kate Swinburn

Twitter: @KateSwinburn

Dr Kate Swinburn is a freelance academic and will be project manager for the final stages of the LUNA project. She qualified from City University as a speech and language therapist in 1987 and worked for the NHS for 15 years in acute, rehab and community settings specialising in adult neurology. She moved into the voluntary sector in 2003, to work at Connect – the communication disability network for 10 years writing & delivering training, writing & editing publications, and advocating for people with aphasia in national policy arenas. Her academic contributions have always run alongside her paid employment. Her academic interests focus on people with acquired communication disability (particularly those with aphasia and dementia), working alongside them during co-produced projects, and integrating the social model of disability into the research agenda, especially into outcome measurement. Her work has been published in peer-reviewed journals, and book chapters and she has presented at national and international conferences. Kate was awarded her PhD from City University in 2004. She has published two notable outcomes measures: the Comprehensive Aphasia Test (the CAT: Swinburn, Porter, Howard 2006), and the Aphasia Impact Questionnaire (the AIQ: Swinburn 2018). She is a member of Working Group 2 Assessment & Outcomes, within the international network Collaboration of Aphasia Trialists, where she is supporting the adaptation of both the CAT and the AIQ into 17 international language adaptations (currently). She was made a Fellow of the Royal College of Speech and Language Therapists in 2012. Currently she is an honorary lecturer at University College London and is a consultant working on curriculum development for St George’s University of London medical school. Kate was drawn to the LUNA project by both the team and the resource. She was impressed by the merging of evidence-based practice and painstaking co-production. She is excited to be able to bring her experience to the final stages of what she believes will be a fantastically practical and accessible resource for therapists and people with aphasia alike.