A World that Understands

About the authors:

Gillian Rudd is a Senior Lecturer (Developmental Communication Needs) for the BSc (Hons) Speech and Language Therapy course at Birmingham City University in the UK. She is also a Specialist Speech and Language Therapist registered with the Association of Speech and Language Therapists in Independent Practice (ASLTIP). Gillian has extensive experience of supporting children and young people with a wide range of communication needs and additional expertise in working with children and adults presenting with fluency difficulties (stammering or cluttering). She promotes a person-centred, solution-focused approach in both her teaching and practice and believes in supporting individuals and families to make informed decisions at all stages of the therapy process. Gillian is actively engaged with local and national specialist and professional networks and is a member of the RCSLT West Midlands Hub, the National Clinical Excellence Network in Disorders of Fluency, the British Stammering Association and the Giving Voice Innovation Group.

meredithGrant Meredith lectures in Information Technology for the School of Engineering & Information Technology at Federation University Australia and is the Associate Dean of Student Retention and Success for the Faculty of Science and Technology. Grant leads the Technologies for Empowering People for Participation in Society (TEPPS) programme which aims to enable the lives of people the world over through the radical design of software and hardware solutions. Grant is an active researcher and presenter within the fields of educational equity, assertive technologies and emerging technologies. Grant is actively engaged within the stuttering world and also sits as a community representative on Speech Pathology Australia’s Ethics Board.

The purpose of this paper is to outline the challenges that the Speech and Language profession faces when attempting to promote its evidence-based practises and research to a diverse global audience. These broad communication challenges can be magnified when put into competition against professionally unsupported and unproven programmes, cures and treatments which propagate themselves amongst communities of people who stutter due to the freedom of expression nature of the World Wide Web. This paper will then conclude with some strategies for Speech and Language Therapists and related academics to consider when promoting their work and treatments to a wide range of audiences.

Speech and Language Therapists (SLTs) are allied health professionals who use evidence-based practises to support children and adults with a range of communication and swallowing needs. Despite the profession’s universal aim to make a positive difference to the lives of individuals, reported experiences vary widely and there are few interventions which provoke such a divisive range of responses. Even the likes of advertisements for three day stuttering wonder cures or a Tony Robbins’ seven minute stuttering cure video stir less debate and divide in comparison to evidence-based approaches. A quick search in any online forum provides ample supporting evidence for this divide: while some report that conventional therapy transformed their life and enabled them to move forward, others report quite the opposite views. The criticisms against conventional evidence-based therapies are as varied as the community from which they originate: SLTs’ knowledge, skills, career passion and experience, flexibility in offering appointments and their lack of involvement in the community which they support all come under attack. Some feel intervention should be offered immediately and intensively, whereas others feel intervention should not be offered at all and the interference of SLTs simply continues to add fuel to the idea that those who stutter are in need of fixing. Some SLTs at times truly feel disheartened by the range and scathing attacks on their profession and practices which exist out in the open and largely uncensored world of social media. In some cases the old sales adage holds true “A happy customer tells a friend; an unhappy customer tells the world”.

We suggest that part of the difficulty of this inevitably arises from the eclectic nature of speech and language therapy, which the U.K.’s Royal College of Speech and Language Therapists (RCSLT) (2009) the peak professional body for SLTs in the United Kingdom and Ireland, describe as following ‘a number of different approaches, depending on the age of the individual and the severity of the fluency problems and its consequences’. RCSLT report that models of care typically embrace ‘a mixed approach reflecting the wide range of influencing factors (physiology, linguistics, environment, learning behaviour and emotion)’. To put it simply, speech therapy does not allow for a simple “one size fits all” solution and nor should it be allowed to. This means that without a comprehensive history of treatment, it is difficult to analyse where the breakdown occurred in therapy for any one individual and to clearly ascertain the reason(s) why. Additionally, SLTs have limited right to reply in these instances publically and in social media. It would be considered unprofessional to engage in such personal and open debate, not to mention unethical and largely unproductive. No medical professional wants to focus their energy on engaging into a long protracted and public online battle with a disgruntled and opinionated client. Whatever the background of these postings, the experience has obviously been less than helpful to the individual for a number of reasons both obvious and not so clear to the client. It is also impossible to truly understand how much effort and willingness to change that the client put into the delivered therapy. However speech and language therapy in all its forms aims to deliver evidence-based and tailored therapy to deliver the best outcomes possible in conjunction with considerable patient investment of effort and drive.

This does not mean that SLTs are arrogantly or ignorantly shying away from the conversations and debates – simply they are choosing to take part in different and more productive ways. The professional community nationally and internationally recognises the need for open dialogue and the delivery of services which meet the needs of everyone that accesses them. In 2011, the RCSLT launched ‘Giving Voice’ (www.givingvoiceuk.org), a national campaign which aimed to raise awareness of communication/swallowing needs, the role of speech and language therapy and the economic and political challenges which negatively impact on service delivery. SLTs across the UK actively lobbied decision-makers such as Members of Parliaments (MPs) and councils, whilst working alongside service users to ensure that personal stories of change were heard (see an example here: https://youtu.be/U8xlNBmYdqQ created by Bradford District Care NHS Foundation Trust). Alongside this campaign, The Communication Trust (www.thecommunicationtrust.org.uk) led Hello, the National Year of Communication, which saw service users and professionals work together to raise awareness the impact of communication difficulties on children and the need for timely and evidence-based support. The British Stammering Association (BSA), (www.stammering.org) was and is a key partner in these initiatives, working hard to ensure that the messages shared reflected the diverse needs of the stammering community.

Building on the successes of Giving Voice and Hello, the International Communication Project (ICP) was launched in 2014 by national speech and language therapy organisations in Australia, Canada, New Zealand, the Republic of Ireland, the United Kingdom and the United States. Local and national groups from across the world participated in a year of focused awareness-raising, including those from Europe, China, the Democratic Republic of Congo and Iran. The aims included improving access to care, widening research, increasing public awareness of communication disabilities and encouraging people around the world to join together to make a difference in the lives of people living with a communication difficulty.

The BSAs membership is made up of those ‘interested in and affected by stammering’. Its aims include helping people, raising awareness and lobbying for change. The International Stuttering Association (ISA), works towards creating ‘a world that understands stuttering’ and recognises the need to both educate the general public and facilitate communication between children and adults who stutter, therapists and researchers (Pill et al, 2001). Another international example is the Australian Speak Easy Association (http://www.speakeasy.org.au/) which is Australia’s largest non-for profit self-help organisation for people who stutter (PWS). Speak Easy Australia is a prime example of SLTs and PWS working together to inform each other and the wider community about stuttering. Member SLTs help to feed in and inform about the current state of stuttering research and people who stutter assist to inform the SLTs by willingly sharing their personal stuttering behaviours and stories.

So with the goals of the international stammering and SLT communities being more closely aligned than we might at first expect, how should we proceed? The authors would like to suggest that our primary focus should be on past, present and future lines of research. PWS are often reluctant to take part in research studies but what if this were different? Research enables PWS to share their views about what works and what doesn’t, it enables fair scrutiny of new approaches and evaluation of interventions over time. In fact qualitative research gives true voice to those who perhaps may usually shy away from speaking out loud and proud. Despite this, research generally remains largely inaccessible to the community which it serves, due to both format and cost. Unlike its cousin ‘market research’ which is widely understood, discussed and promoted, surprisingly clinical research seems to be considerably less revered although it is highly scrutinised. The majority of people engage with healthcare services in some way but few understand the systems for controlling the quality and effectiveness behind these, which creates an environment ripe for mud-slinging. For example, few people outside of academia and health services understand the importance of evidence-based research, the amount of ethical considerations involved and the timelines associated with producing peer reviewed outcomes. Why is research often only introduced to individuals studying higher education courses? Why aren’t we taught about how to access, understand and engage with this important tool much earlier in life? And while we’re at it, why is lots of this important research hidden in expensive journals, effectively preventing most people from seeing it? Of late there has been a push to drive the price of journal access down and this has been assisted by a demand for open access journals which are mostly free to access. These journals are more accessible to the general public but sometimes come at a cost to the author in terms of a publication fee. In turn, some open access publication decisions are weighed up against the cost to the author and the resulting academic impact due to the unfortunate fact that not all freely accessible journals are ranked highly in the academic world. It is little wonder that research is often seen as a ‘purely academic endeavour’ and ‘bad science’ (Goldacre, 2009) and ‘snake oil’ (Meredith and Gunn, 2012) prevail.

Our vision is of a world that understands research and how it has informed practise. A world where PWS, the people that love them and the decision-makers organising services are able to make decisions informed by a sound evidence-base which is up-to-date, easily understood and open to all. And whilst we’re not there yet, we are on our way, with free resources such as SpeechBITE (http://speechbite.com/) and What Works (http://www.thecommunicationtrust.org.uk/projects/what-works/whatworkssearch.aspx) enabling individuals to read about the format of different approaches and the available supporting evidence. What is also required is that the SLT profession looks at different approaches and ways to disseminate the research which guides their practices currently and into the future. An accessible approach is required and will need to be shaped to meet the needs of different audiences. Many great communicators shape their messages and promote their work to different audiences in different forms. For example an experienced researcher may have strategies to communicate their research so that anyone can basically understand it:

  • A 30 second story which can relate your research to anyone passing you by in the street;
  • A 5 minute spiel in which you can elaborate a little more and give some broader detail; or
  • A 30 minute spiel in which you can go into the fine and elaborate details of your study.

Another strategy which works well for some individuals and organisations is to use as many avenues as possible to advertise what they do. In order to be successful, this approach requires individuals and organisations with passion, time and the ability to communicate well to different audiences. One strategy is for SLTs to look for positive and accessible media opportunities through which to promote their work and the stuttering world. These avenues could range from a talk to a local community group, a radio show, a magazine article, all the way up to a peer-reviewed journal article. But all this itself takes precious time and it will require SLTs and PWS to work together to spread the word.

In the meantime – what about those unhappy with their speech and language therapy? The authors encourage individuals to openly discuss their concerns with clinicians or services; to directly ask about the options and research available and to remember that they alone are the expert on what is right for them. As the BSA (2014) states, there is ‘no one size fits all approach to stammering therapy’ and you might find that a different clinician, a different approach, a combination of approaches or no approach is what’s right for you. Above all, whatever path you choose, take inspiration from Bruce Lee and “absorb what is useful, discard what is useless and add what is specifically your own”.

Source: https://www.pinterest.com/pin/532972937127523099

Source: https://www.pinterest.com/pin/532972937127523099

References

British Stammering Association (2014). “Topics: Therapy/Treatment.” Retrieved 31st August, 2015, from http://www.stammering.org/help-information/topics/therapy-treatment.

Enderby, P., Pickstone, C., John, A., Fryer, K., Cantrell, A., & Papaioannou, D. (2009). Resource manual for commissioning and planning services for speech, language and communication needs. London, England: Royal College of Speech and Language Therapists.

Goldacre, B. (2011). “Battling Bad Science.” Retrieved 31st August, 2015, from http://www.ted.com/talks/ben_goldacre_battling_bad_science?language=en.

International Communication Project (2015). “The International Communication Project.” Retrieved 31st August, 2015, from http://www.communication2014.com/about-icp/.

Meredith, G., & Gunn, A. (2012). Digital snake oil: The emergence of online stuttering scams and shams. Paper presented at the International Stuttering Awareness Day Conference.  http://www.mnsu.edu/comdis/isad16/papers/meredith16.html.

Pill, J., Ravid, B., Irwin, M., Hoffman, S., Vloed, M.D., Krall, T. & Hoffman, M. (2001) International Stuttering Association. Paper presented at the International Stuttering Awareness Day Conference. http://www.mnsu.edu/comdis/isad4/papers/pill.html.

St. Louis, K. O. (2013). “International Project Attitudes Toward Human Attributes“. Retrieved 31st August, 2015, from http://www.stutteringattitudes.com/.

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Comments

A World that Understands — 12 Comments

  1. An interesting paper, Grant and Gillian, very relevant in the wake of the growth of social media self-help in stammering.

    I wondered what you thought of media portrayal of stammering therapies and how it affects promotion of evidence-based practises and research?

    In my experience, the media often falsely portray stammering treatments. Writers are keen to write a “cure” or “overcame” stammering piece rather than writing about the evidence based techniques. I feel the media often further propagate unproven programmes to a wide audience. Further education of media staff in stammering and research principles is key but perhaps not attainable in the near future.

    • Hi Patrick,

      Thank you for your comments. I agree that therapies and treatments are often poorly portrayed in the media. Without wanting to stand on my soapbox for too long (!), I think this is a general issue with media reporting on health related issues – not just related to stammering. Many journalists are not taught to critically evaluate the evidence base even if they are able to access it (or are often simply under far too much pressure to produce articles with very little time) resulting in a tendency to rely heavily on abstracts, hearsay and soundbites. Factually flawed, sensationalist articles are easily read and shared, generating a confusing range of information for anyone trying to get answers.

      I don’t think that there are any quick solutions to this. I do think that we have a lot of great tools and resources at our disposal to help us work towards changing the culture. Direct transfer of knowledge between those interested in stammering (such as this conference) is key – particularly when it involves people sharing their own experiences (through the media but particularly through taking part in research). Organisations such as the British Stammering Association and the Stuttering Foundation of America are able to act as advocates and a point of liaison with the media, advising individuals who are sharing their stories, as well as the journalists writing them. Researchers have a duty to share their findings and to work towards doing this in a way that makes a difference to practice, rather than simply adding to a list of publications. It won’t change overnight, but I think that getting more ‘good information’ out there has to be the first step.

    • Hello Patrick, you are correct about the media and they can be difficult to deal with at times. They of course like to use buzzwords like “cure”. Some non-evidence based treatments are very aggressive (even sponsoring) media stories of course advertise success. These treatments and programs of course do not usually advertise cure, but they do not mind the fact if the media uses such words and intentions. All good for sales. Also I think the media simply needs to be educated more about stuttering from professional organisations, SLTs and academics. I think hubs of trusted and verified online resources need to be established and promoted. Also possibly well informed press packs about stuttering. But I think it will be a tough job to change writing styles and headlines. One problem which weighs into your thoughts a little is how famous people who “overcame”, “used to”, once” stuttered are promoted by themselves, their agents and the media. They make their story (if 100% accurate) usually sound so easy really.

      • Thank you for both responding so thoroughly. I agree the challenges with the media are not limited to stammering: engagement with the media is becoming a critical part of scientific work.

        I think personal testimonies are hard to challenge (e.g. I used to stammer) as they maybe correct from the personal point of view and the individual will have a strong belief in their views. However, these stories may not reflect the normal course of stammering and other people’s opinion

        • I think that’s the challenge with patients being viewed as consumers. They’re being expected to make decisions about treatment without having all of the relevant information available to them and as with other industries, the organisations with the best marketing (not necessarily the best product) are ahead of the game.

          As a side note, I don’t think we’ll ever stop the sensationalist stories being produced…after all, the media often courts unusual features and ‘success’ stories (e.g. ‘I married a house’; ‘I lost 3 stone in a month’; ‘I only eat bananas and am healthier than ever’ etc). We can however encourage individuals to consider all information that is out there more critically.

        • So true Patrick. The challenge of role models and media portrayal is perhaps a paper for next year 🙂 It is all about choosing the right role models for the right purposes. Just as long as they do not promote everyone who “used to stutter”. Considering the amount of kids who naturally recover then there are many of us 🙂 But yes the media is a beast to understand and harness. I was involved in a national radio broadcast two years ago about a project I was working on. I gave the producer a list of questions not to ask me. Point 1: I am a person who stutters but this does not make me an expert so do not ask me about cause.

  2. Gillian, Grant,

    Thank you for this excellent and thoughtful paper. As a SLP graduate clinician, I find myself very intimidated by the amount of available literature regarding stammering/stuttering therapy. My question for you: Where does a new therapist begin when looking for evidence based research on stuttering? Do you have any suggestions?

    Thank you,

    Brittany

    • Hi Brittany.
      Thanks for your comment, and wow – great question! I totally understand that feeling of being overwhelmed by the quantity and range of available information. My personal recommendation would be to be guided by need and interest. What are the questions that your clients have? What questions do you need to answer to inform your assessment/intervention decisions? What are you personally interested in finding out? Obviously peer-reviewed journal articles are a key source of new information but I’d also recommend subscribing to relevant social media feeds and downloading some of the fantastic podcasts on StutterTalk for accessible information on current topics. Special Interest Groups/Clinical Excellence Networks and national conferences are also wonderful sources of information, support and networking.
      Remember, we’re all still learning, all of the time and that’s appropriate in a field where so much important research is ongoing. Nobody has all of the answers yet!
      I hope that helps?
      Gill

  3. I really appreciate your philosophy and approach to PWS. As a graduate student in communication science and disorders, I am just now beginning to understand some aspects of stuttering in my fluency disorders coursework. I especially like what was said about a vision for a world with an “informed practice”. I think that they are so many misconceptions about stuttering and PWS and it’s going to take a drastic shift in public perception and knowledge about PWS to slowly make that shift.

    • Thank you for the words of support Brooke. Yes a large public education campaign and general media portrayal of stuttering shift is required to properly educate. Interestingly some of these myths and conceptions are sometimes spread by people who stutter who themselves are misinformed.

  4. As a current graduate student I found this paper to be very insightful. I am currently taking a fluency course and we have talked about the many aspects of stuttering and strategies used in treating stuttering. This paper really made me think about how people’s opinions play a huge role in the treatment of individuals who stutter. It was interesting to see how some evidence based practices were said to help some individuals who stutter while others reported opposite views. People in the stammering community have diverse needs and I feel that treatment should be individualized to cater to the individual’s needs. In doing so, one method of treatment may benefit the individual while another may not. I liked how the BSA (2014) statement was mentioned in the paper that there is no one size fits all approach to stammering therapy. Awareness of stuttering and current research will help in finding what is best for the individual. I enjoyed reading about what is needed to make change and how therapists and PWS must work together to spread the word. The authors did a great job of outlining challenges that therapist may face when attempting to promote evidence based practices and research to a global audience. I found the paper to very helpful and it made me really think about how I could help enhance awareness of stuttering to the media and public.

    • Nice to meet you Peter and thank you for the vote of confidence in our lines of thinking. Yes treatment has to be indivualised and that will also take a shift in thinking from the SaLT profession. It cannot be assumed even any more that a PWS is seeking therapy to solely improve their fluency. A more holistic view of treating the client is required and that will take a team-based approach at times involving other disciplines like psychology.