We are delighted to welcome to new staff to the LUNA team. Carla Chynoweth and Sarah Johnston have joined LUNA this month. They are working on our knowledge exchange project during May, and take up their roles as Clinical Assessor and LUNA Therapist respectively from the 1st June onwards.

Carla Chynoweth

Twitter: @Carla_SLT

Carla is a Speech & Language Therapist who has joined LUNA as a Clinical Assessor for the final phase of the project. Furthermore, she is investigating the stability of personal narratives for people with aphasia for her Masters. Since qualifying from City with a Postgraduate Diploma in Speech & Language Therapy in 2018, she has worked in a community neuro-rehabilitation team within Oxleas NHS Foundation Trust for 18 months, working with adults with long-term communication and swallowing difficulties due to acquired and/or progressive neurological conditions. Carla especially enjoyed working alongside people with language difficulties to achieve something meaningful in their day-to-day lives. A fascination in the ways messages and stories shape our lives, communities and behaviours led Carla to obtain an undergraduate degree in Theology from the University of Durham, a Masters in Biblical Studies from King’s College London, and to work as an Internal Communications Specialist for four years. After identifying that working with individuals was a key part of job satisfaction, she retrained to work in the healthcare sector. Carla was attracted to the LUNA team because the researchers have shown commitment from the outset to collaborate with therapists and people with aphasia, and to facilitate the application of knowledge into action to make a tangible impact in clinical practice and in the lives of those with aphasia.

Sarah Johnston

Twitter: @SarahJo96348027

Sarah qualified as a speech and language therapist in 1997 from City, University of London. Her passion was always to work with adults with acquired communication disability, but with a special interest in aphasia. Sarah has worked with this client group across a range of NHS settings; acute wards including critical care, designated stroke units, a neuro-rehabilitation centre, and in the community. In addition to clinical work Sarah has been committed to supporting the development of environments conducive to supporting communication with people with aphasia. Within the NHS this has involved offering training sessions for other staff members, as well as being a member of the Trust wide ‘Accessible Information Group.’ Sarah has also taught the communication module for the Physiotherapy MSc at Brighton University. The opportunity to join the LUNA team as a treating therapist was really exciting for Sarah as she is passionate about promoting inclusion for people with aphasia and is therefore committed to a ‘Life Participation Approach.’ LUNA offers a framework which can be replicated in clinical practice to focus on participation goals and make therapy more meaningful.

The LUNA team want to say a BIG thank you. A thank you to the 269 speech and language therapists out there across the UK who started our LUNA survey in August 2018, and a thank you to the 211 therapists who made it through to the end of the survey and submitted their responses. You all made this research. We’re extremely chuffed about what we’ve found in discourse analysis practices of therapists in the UK, and now delighted we can share the paper with everyone. It’s available on the International Journal of Language and Communication Disorders website here, and also freely available at City’s OpenAccess website here. We encourage clinicians to download the paper from the IJLCD website, and don’t miss the supplemental file too as this contains detailed information on the kinds of discourse behaviours people are analysing, and how confident (and not) people feel about analysing these aspects of language and discourse from clients with aphasia. Last but by no means least, a thank you too to The Stroke Association for funding LUNA.

A short and sweet post on our recent feature in Stroke News.

We were pleased to be invited to feature in the Stroke Association’s magazine Winter 2019 edition. The magazine is published three times a year and is freely available in print and online. You can view the article here https://www.stroke.org.uk/resources/stroke-news-winter-2019 and also listen to the audio version. Our co-designers with aphasia hope that their involvement will inspire other stroke survivors with aphasia to get involved in shaping research.

Oh dear oh dear. LUNA subscribers we are sorry. We realise we have not posted project news for months now. And somehow we are already in March 2020 (and our world is suddenly very different). Prior to COVID-19, we have been extremely busy at LUNA Headquarters getting our ducks in a row for our final phase (our experimental feasibility study) and some important activities like keeping everyone updated have fallen by the wayside. We apologise. We’re going to make amends now, and share news more regularly. For this post, we are going to turn the clocks back to September 2019, where LUNA was in fine force in Norwich at the University of East Anglia for the British Aphasiology Society Clinical Symposium organised by Dr Ciara Shiggins and committee.

We submitted two abstracts and were delighted to find them accepted as a lightning talk and a poster. Simon Grobler and Richard Talbot presented on behalf of the speech and language therapist co-design team and talked about the techniques used in the co-design sessions, the influence therapists have had on developing LUNA, and the challenges and benefits. Lynn Scarth and Madeleine Pritchard presented on behalf of the consultants with aphasia co-design team and talked about the ethos underpinning the sessions, the methods used, the activities experienced, and the benefits of being involved. Finally, we were privileged to be invited for a keynote lecture, and Madeline Cruice presented on behalf of the whole LUNA team on the evidence and expertise in discourse-oriented aphasia rehabilitation. Working on discourse in assessment and treatment is definitely the road less travelled in aphasia rehabilitation, however it was terrific to share some headline findings from our systematic review of the discourse treatment research literature and our survey of therapists reported practice in discourse assessment (THANK YOU to everyone who completed it in 2018!). You can find out more about these presentations at our link here:

https://wakelet.com/wake/d3720da7-482e-4f6b-8cdb-a29ff77ab243

Being deliverable in the NHS is a key facet of LUNA. We know this is no mean feat: discourse analysis is not currently clinically feasible. International research and our own survey data indicate a number of barriers, including SLTs reporting a lack of skills, knowledge, and confidence.

In July 2019, the LUNA team trained 58 eligible UK NHS SLTs across 2 days, in the use of 6 discourse analyses, at word, sentence, and discourse levels.

The training days were an opportunity to face these challenges around discourse analysis head on. We acknowledge that discourse analysis is usually complex, challenging and time consuming. We need analyses which are simpler, more straightforward, and relatively time efficient, so they can be used in everyday practice.

We’ll be looking at how far we got with addressing these challenges in data from the training days, crunched over the coming days and weeks. Tweets and feedback from the day suggest that SLTs enjoyed and got a lot from attending. Here’s a sneak peek:

https://wakelet.com/wake/1d86cb8b-4aff-4639-ac55-a11d7ba375e4

In June, we also reached the end of our LUNA phase 3 codesign process with SLTs, which involved…

• 11 sessions;
• 44 hours;
• 6 months;
• 25 discourse intervention research papers;
• 12 hours alone reviewing and debating different linguistic analyses for the LUNA protocol;
• Countless clinical resources;
• Big discussions around implementation and feasibility.

And, just like the sessions with people with aphasia – rather a lot of collective energy and brainpower.

We’re really looking forward to sharing the outputs from this process (watch out for our Lighting Talk at the British Aphasiology Society Clinical Symposium, and an article in the Stroke Association ‘Stroke News’ Winter edition). In the meantime, here’s some of our highlights from the process, gathered from Twitter:

https://wakelet.com/wake/6b14190a-606b-4a8e-b8e2-d9f23d779771

We’ve reached the end of our LUNA phase 3 codesign process with people with aphasia, which involved…

• 5 sessions;
• 27.5 hours;
• 6 months;
• 25 discourse intervention research papers.

We trialled all the different discourse therapies reported to date; shared countless stories; explored ways of putting together LUNA therapy as a whole in people’s own words, that make sense to them; and used a lot of collective energy and brainpower.

We’re really excited to share the outputs from this process (watch out for our poster at the British Aphasiology Society Clinical Symposium, and an article in the Stroke Association ‘Stroke News’ Winter edition).

In the meantime, we’ve collated our tweet highlights from the process:

https://wakelet.com/wake/cd900d0a-ad63-4340-b057-debaa1e0c9c4 

Getting up close and personal in language: LUNA, a novel treatment for discourse in aphasia rehabilitation

A version of this article appeared in the February 2019 edition of Bulletin, the professional Speech and Language Publication of the Royal College of Speech and Language Therapists (UK).

LUNA (Language Underpins Narrative in Aphasia) is a research project that takes an innovative, creative, and empowering approach to supporting people with aphasia to tell personal narratives. This is a new research project at an early stage, and we want as many cliniciansas possible to engage with us from all sectors: NHS, independent practice, voluntary services, and universities.

The importance of discourse

Aphasia is a chronic communication disability and individuals, many years post-onset, still want aphasia rehabilitation. Working on discourse is crucial because discourse is central to everyday communication, and improving everyday communication is the primary aim of aphasia treatment and a priority for people with chronic aphasia (Wallace et al 2017).

The evidence-base and expertise

Achieving improved discourse is a challenge with respect to two of the three pillars of evidence-based practice: scientific research and the clinical expertise of SLTs (the third pillar being patient preferences). The scientific researchin aphasia is largely derived from studies in chronic aphasia, and shows that word and sentence level treatments are effective at these targeted levels(Brady et al 2016), but have minimal to no benefit at the discourse level(Webster et al 2015). This tells us that treatments need to be delivered differently in order to achieve discourse benefits. Effective treatments for discourse are few, and there are concerns about the choice of treatment targets which are frequently derived from experimental stimuli rather than from everyday talk.  In addition to these issues, outcomes are difficult to demonstrate given the complexity of discourse assessment. Recent surveys of the evidence base reveal inconsistent practices and multiple measures, and there is a lack of agreement about which aspects of discourse production to assess, providing no guidance for SLTs for the what or how in conducting analysis (Bryant et al 2016; Pritchard et al 2017).

Turning now to clinical expertise and practice, there are several equally important concerns. In 2017, Bryant and colleagues published the results of an international survey of SLT practice relating to discourse assessment (Bryant et al 2017).  Although the results are not representative of the UK (only 7 UK SLTs participated) they are indicative, and show that SLTs use observation and clinical judgment to assess discourse, typically transcribing without recording, and relying mostly on discourse from picture descriptions in language tests. More formal practices are needed though for accurate diagnoses of strength and deficit in discourse production.  Other surveys investigating aphasia scope of practice more widely, also indicate that SLTs find working with discourse difficult (Rose et al 2014). They report a range of barriers including, a lack of clinical time (for analysis), resources, knowledge and skills, and confidence.  The surveyed SLTs identified training as a way of addressing afore-mentioned barriers, and indicated that the development of new discourse treatments was a research priority.

Proposing a new treatment in aphasia: Language Underpins Narrative in Aphasia (LUNA)

For all these reasons, we developed LUNA, a novel treatment for discourse production in aphasia that addresses word, sentence and discourse levels, using a personal narrative told by the individual both as the discourse for analysisand the stimulus for selecting treatment targets. Multi-level treatments are a very recent development in aphasia (Carragher et al., 2015; Whitworth et al., 2015) and LUNA builds on these to create a new discourse intervention that integrates existing treatments (semantic feature analysis and mapping therapy) with discourse level treatment (story grammar).  A key feature of LUNA is the use of personal narratives to generate all treatment targets and, simultaneously, to address salience, motivation, and identity re-negotiation for individuals with disrupted lives (Shadden & Hagstrom. 2007). Personal narratives are central to everyday communication, and are multi-functional (referential, evaluative, intra- and inter-personal).   LUNA takes a meta-linguistic approach to the treatment of personal narratives, in which participants are taught about their language and given strategies for increased control over their storytelling.

Pilot work successfully supported a grant application to The Stroke Association Rehabilitation and Long Term Care Project Grants Panel, which was funded in September 2017 (https://www.stroke.org.uk/research/can-we-develop-new-language-treatment-improve-everyday-talking-people-aphasia). LUNA is almost 3 years in length, and started May 2018; it has two stages, with end-users (NHS SLTs and people with aphasia) involved from the outset to address future implementation.

Stage 1 has 4 aims: (1) a theoretical review of language and discourse models, and systematic review of the relevant treatment literature; (2) a UK-wide survey of SLTs’discourse practice; (3) the co-design (with NHS SLTs and people with aphasia as co-designers) of LUNA materials; and (4) delivery of a LUNA training programme to SLTs, to ensure clinically feasible methods are taken through into the next stage of the grant. Stage 2 involves testing the effectiveness of the LUNA therapy experimentally.  This involves two groups of 12 people with aphasia (one group receiving LUNA plus their usual SLT care, the other receiving their usual care only). After the therapy we will conduct participant interviews, and also compare outcomes on quantitative discourse measures and psychosocial state.  The research is developmental, and if we demonstrate that LUNA is feasible, acceptable, and shows promise, it will be scaled up into a larger randomized controlled trial delivered in the NHS.

Who’s involved?

LUNA is led by Madeline Cruice and Lucy Dipper at City University of London, with co-investigators Professors Jane Marshall and Nicola Botting (also at City), and Professor Mary Boyle (Montclair State University, New Jersey) and Associate Professor Deborah Hersh (Edith Cowan University, Western Australia). Project staffing includes Dr. Madeleine Pritchard as post-doctoral researcher, and 4 research assistant posts that will be available in late 2019 to undertake assessment and discourse analysis (separate from treating team to ensure blinding). We have a strong co-design team of (1) NHS SLTs: Sukhpreet Aujla, Central London Community Healthcare NHS Trust; Nicole Charles, St George’s University Hospitals NHS Foundation Trust; Helen Day and Simon Grobler, Oxleas NHS Foundation Trust; and Fiona Johnson, Homerton University Hospital NHS Foundation Trust; and (2) people with aphasia:Jan Bannister, Lynn Scarth, Steve Morris, and Varinder Dhaliwal.

With thanks

Last, but by no means least, we would like to take the opportunity to thank our supporters: (1) thank you to the SLT Leads and/or Therapy Managers from 60+ NHS Trusts, who responded to the call for granting study leave support in principle for a team member to participate in Aim 4 LUNA training, we look forward to working with you in summer 2019; and (2) thank you to our many research students who have worked with us over the past 3 years on pilots towards LUNA – Emily Wakefield, Alice Thompson, Emma Rhodes, Alice Gardner, Amy McClean, Jayla Arnold, Ciara O’Gorman, Danielle O’Sullivan, Verity Carver, Jennie O’Grady (winner of the British Aphasiology Society Student Project Prize 2016), Sophie Street, Dimitri Dolor, and Rebecca Brothwood. Your collective interest and commitment has been encouraging and affirming of the need for this research and potential for people with aphasia.

How to get involved

We encourage as many clinicians as possible to engage with the project. You can do this by subscribing https://blogs.city.ac.uk/luna; following @LUNA_Aphasia on Twitter; and emailing luna@city.ac.uk. You can help shape the direction of LUNA, and help us understand and plan how LUNA can be implemented in the NHS in the future. Subscribing to the website will mean you will automatically receive the blog updates, hearing news and updates first hand.

References

• Brady et al. (2016). Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews, Issue 6. Art. No.: CD000425. Available freely at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD000425.pub4/full.
• Bryant et al. (2016). Linguistic analysis of discourse in aphasia: A review of the literature. Clinical Linguistics & Phonetics, 30(7), 489-518.
• Bryant et al. (2017). Clinical use of linguistic discourse analysis for the assessment of language in aphasia. Aphasiology,31(10), 1105-1026.
• Carragher et al. (2015). Preliminary analysis from a novel treatment targeting the exchange of new information within storytelling for people with nonfluent aphasia and their partners. Aphasiology, 29(11), 1383-1408. Also available freely at http://eprints.uwe.ac.uk/26101/.
• Pritchard et al. (2017). Reviewing the quality of discourse information measures in aphasia. International Journal of Language and Communication Disorders, 52(6), 689- 732. Also available freely at http://openaccess.city.ac.uk/17105/.
• Rose et al. (2014). Aphasia rehabilitation in Australia: Current practices, challenge and future directions. International Journal of Speech Language Pathology, 16(2), 169-180.
• Shadden & Hagstrom (2007). The role of narrative in the life participation approach to aphasia. Topics in Language Disorders, 27(4), 324-388.
• Wallace et al. (2017). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability & Rehabilitation, 39(14), 1364-1379. Also available freely at http://openaccess.city.ac.uk/15003/.
• Webster et al. (2015). Is it time to stop “fishing”? A review of generalization following aphasia intervention. Aphasiology, 29(11), 1240-1264. Also available freely at https://eprints.ncl.ac.uk/211253.
• Whitworth et al. (2015). NARNIA: a new twist to an old tale. A pilot RCT to evaluate a multilevel approach to improving discourse in aphasia. Aphasiology, 29(11), 1345-1382.

We’ve had two codesign meetings with our four speech and language therapists (SLTs) so far, and wanted to share some reflections on the process, and how valuable it is in the project. And we were hoping that other SLTs around the UK might chip in through the blog or on twitter and respond to our questions.

Real vs. ideal in SLT

In session 1, we invited our SLTs to reflect on the real and the ideal in the therapeutic process. Specifically, we asked them to comment on the following question:

From your own perspective, what does the process look like for you when deciding on, preparing, deliver, and evaluating aphasia treatment for someone with aphasia? [includes what resources and materials are used].

This led to some fascinating discussion and insights into how clinical decisions are made, which might be influenced by access to resources, expertise, trust, and setting. We had some particularly meaty discussion around how (therapy) resources are used; how personalised therapy resources could be (which is important in LUNA); and how intervention outcomes are currently being evaluated.

SLTs then considered an ideal situation (…we’re exploring some ‘blue sky’ thinking as a backdrop for LUNA…). This was especially illuminating, and with discussion covering how aphasia therapy and the rehabilitation process could be more ideal if we used standard outcome measures, could find more opportunities to incorporate therapy into everyday life, including self-directed therapy and involving family more in the client’s rehabilitation. SLTs also raised having more therapy time, more time to analyse client data, having resources to draw upon, and personalizing therapy.

LUNA would love to hear from SLTs across all settings – what does ideal aphasia therapy look like, from your perspective as a professional/ service provider?

Synthesising research for clinical practice

We then turned our attention to our scoping review-in-progress of discourse treatment research studies in aphasia and explored what makes a literature synthesis useable to clinicians.

So far, the list looks like this:

(1) the therapies/ treatments used are usefully described, or at least signposted so you can follow up and read the journal article;

(2) making sure the therapies themselves are clearly named and defined as acronyms and familiarity can lead to assumptions that others know the treatments being talked about (when this is in fact not the case!);

(3) presenting the findings in bite-sized chunks e.g. 5 minutes’ worth in recognition of busy practice and to therefore capitalize on small windows of time;

(4) highlighting if therapy manuals or resources are easily available, and whether the therapies must be carefully adhered to protocol or more flexibly delivered/ applied;

(5) grouping findings in a useful way perhaps around client profiles, or types of treatment, so it’s easy to see how and when a clinician might choose/read/ apply to a current client on caseload; and

(6) taking active steps to use it in practice such as taking one idea, trialing it, and feeding back at a team meeting or a “monthly challenge”.

LUNA would like to know: what makes a literature synthesis useful to you as a SLT?

We finished session 1 with some discussion around a model or framework that underpins LUNA, which attempts to represent the many aspects involves in telling a personal narrative/ story. There was much debate and discussion in the room around what we want a model or framework to achieve – and how we are going to share this more broadly with clinicians and researchers. There were many differing views.  It’s safe to say this will be an ongoing discussion throughout our project, so we’re keeping quiet on this at the moment!

Are you interested in the LUNA model or framework? We will be looking to road-test it at some point. If you are a SLT and particularly interested in this, do get in touch with us on the LUNA email luna@city.ac.uk to volunteer yourself!