The Cochrane Protocol is published!

Åse Sjøstrand, first author

We are so proud to announce that the Cochrane protocol for our systematic review of “Non‐pharmacological interventions for stuttering in children aged between birth and six years” is finally published. The protocol describes what our review will cover, including search strategies, primary and secondary outcome measures and risk of bias analyzes.

You can read the protocol following this link or copying this string into your preferred browser:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013489/fullfbclid=IwAR25PdgUndbDPr6mulA_K9uOAVT87SuGfrvK3WUcyx575vE8w0qPwBAb0g

We have spent the last year working on the protocol. This work includes writing, planning analyses, working on the comments from peer reviewers and rewriting. Getting to know the process of working on a Cochrane review has been inspiring and we have learned a lot over the last year. 

The Cochrane Developmental, Psychosocial and Learning Problems group have provided highly appreciated support during the process to enable the protocol to meet the high-quality standards. We are thankful for all comments, reviews and suggestions for improving and clarifying the protocol.

Now awaits the next step! We are motivated to start the screening process for randomized controlled trials (RCTs) of all forms of non‐pharmacological interventions for stuttering in young children compared with no intervention, a waiting‐list intervention or treatment as usual. We have thousands of published and non-published studies to screen and cannot wait to dig even deeper into the field of stuttering treatment research.

Written by Åse Sjøstrand & Melanie Kirmess

EST in progress - The multidisciplinary survey

One of the working packages for the EST project addresses the development of national guidelines for stuttering treatment for kindergarten children. In order to do so, we first wanted to know the current status quo in Norway. Children at the age of 1 to 5.6 years usually attend kindergarten in Norway. Hence, kindergarten teachers are one of the professions that are very close to children on an every day base as earlier described by Hilde Hofslundengen’s blog post. In addition, health care nurses see all children at certain ages and are trained to observe typical development and to initiate follow ups if needed, as described in a blog post by Elisabeth Holm Hansen.

Illustration from Pexel

Speech-language pathologists are usually first involved after concerns have been raised, either by their parents or by those working in the profession, that that they may have a difficulty/disorder. So far so god. However, we are curious to explore what those three different professions (kindergarten teachers, health care nurses and speech-language pathologists) actually do when they meet a child that may stutter or are contacted by worried parents and caregivers.  Since there are no common guidelines today, that processionals have different educational backgrounds and that there are geographical differences in service offers in Norway, we expect a variation in practice and experience across the involved professions.

Therefore, we have prepared a multidisciplinary survey covering questions as for example, Have you met any children that stutter?, What do you do when a parent is concerned about their child’s possible stutter? and Does your workplace have any strategies or guidelines for addressing stuttering questions?

We prepared three different surveys, one for each profession - kindergarten teachers, health care nurses and speech-language pathologists. All surveys include a number of common questions across professions as well as some profession specific questions.

The surveys were sent out in first part of November. Right now, we are both exited over every new answer we receive  (THANK YOU!) and still a bit nervous if we reach the threshold for total numbers needed to have a representative sample to.

Therefore, if you have received an invitation to answer the survey in any of the professional groups, please take the time to answer. Even though you may never have met a child that stutters in your profession, that is very important information for us about the Norwegian context. Hence, we encourage everybody to answer the survey so that we can prepare the most descriptive picture for Norway and the current situation for kindergarten children that stutter.

Illustration from Pexel

Can my stutter be cured? BBC Crowd Science

In the end of September, a stuttering treatment course in the McGuire-program was arranged in Oslo. The journalist Gareth Barlow and producer Louisa Field from the BBC travelled to Oslo to make a pod cast about this and I was one of the lucky ones that was interviewed.

This was my third time being interviewed on radio, the first time in English on a world broadcasting service. The stress level did indeed reach the ceiling! However, before I met with Gareth and Louisa I was well prepared by the rest of the EST-team, by Ane Hestmann Melle in Statped and by Lise Paulsrud Mjørlund, a senior communication advisor at the University of Oslo. That was a huge help! Additionally, Louisa and Gareth was luckily very friendly, calm and helpful.

Now, one and a half month after, the pod cast is out and Louisa and Gareth has done a wonderful job! The have managed to make a podcast filled with information about stuttering and at the same time highlighting the individual experiences of people who stutter. If you want to gain insight into the impact of stuttering, learn about the McGuire program or stuttering in general I would really recommend you to listen to this podcast! Neuroscientist Soo-Eun Chang spoke brilliantly about the neurological basis of stuttering and Hilda Sønsterud offered her insightful thoughts on the McGuire program. I was also very impressed by everyone that offered their thoughts and experiences with stuttering.

Click here if you want to listen to the program

Stuttering awareness day: Melbourne Edition!

Rich Stephens, a person who stutters, is the President of SAY: Australia, the first international arm of SAY: The Stuttering Association For The Young founded in America/NYC in 2001 by Taro Alexander. Rich and Vice-President Dr. Elaina Kefalianos launched SAY: Australia in Melbourne in June 2019. For International Stuttering Awareness Day (ISAD) 2019, Rich and Elaina truly brought Australia’s attention to stuttering.

Rich says “22nd October is always an important time of year for the global stuttering community. For one day of the year a ‘bright light of awareness’ is shone on stuttering. ISAD helps to educate the world about stuttering, helps to correct many misconceptions about stuttering and also lets people who stutter know that they are not alone.

During previous ISAD’s many stuttering organisations and support groups spread stuttering awareness by holding conferences, educational seminars, and social gatherings. Rich says “I had also read about the odd city showing their support for ISAD by lighting-up one or two landmarks in the international colour of stuttering (sae-green) for the evening. And that idea planted a seed in my head. I did not just want to light one or two landmarks in Melbourne……I wanted to reach every Australian, those who stutter and those who don’t, by lighting-up Australia!”

Bolte brigde

Rich began contacting landmarks in Melbourne and in other cities across Australia, such as Sydney, Perth, Queensland, Adelaide, and Darwin. Rich says, “I remember sending the first email to one of the most famous sports stadiums in Australia, the MCG, asking if they could support ISAD 2019 by lighting-up sea-green. I thought 100% they would say no! But when they responded with a resounding yes, I had the confidence to reach out to landmarks across Australia……and I kept on receiving yes’s! It was unbelievable! We had Sports stadiums, town halls, bridges, hotels, casinos, museums, etc. across all the major Australian cities! And all the while my main thought was how inspiring the night was going to be for so many people who stutter knowing that there country supports them. See the amazing pictures of buildings lit up in sea-green below the text.

On the evening of ISAD 2019, Rich showcased the Australian premiere of ‘My Beautiful Stutter’, an award-winning documentary by Ryan Gielen, which follows 5 young people who stutter from different cities across America and their life-changing involvement in SAY’s creative programs and Camp SAY. After the documentary, Rich and Elaina led the audience, involving two young people involved in SAY: Australia programs, on a tour of the lit-up Melbourne landmarks. Rich says. “Melbourne looked such a beautiful sea-green! The premiere was a huge success! The audience were already feeling warm in their hearts and inspired to spread awareness of stuttering after the movie, but seeing the city lit-up was inspiring to a whole new level! Australia, particularly Melbourne, really did do the stuttering community, here and across the world, proud on ISAD 2019! For ISAD 2020, we’ll try and double the number of landmarks so we can spread awareness of stuttering even further!

My Beautiful Stutter

Telstra tower

Rod Laver arena

Aami park

Melbourne skyline

Celebrating International Stuttering Awareness Day with a free collection of articles

Today, 22 October, Stuttering awareness day is marked around the world, and Norway is no exception. NIFS (the Norwegian interest organization for people with stuttering and cluttering) is informing about stuttering many places in the country today.

NIFS has a stand on Egertorget among other places, today. Their campaign is: "Speak with your own stuttering"

Statped is marking the day by launching a brand new, and free (!) publication consisting of 14 articles aimed for SLPs and SLP-students about assessment and treatment of stuttering in children, youth and adults. EST members Linn and Åse are proud to have contributed to the collection (prior to the ESTs projects start). Linn has been co-writing an article about treatment for stuttering in preschool aged children. Åse’s contribution is an article on assessment and treatment of bilingual people who stutter. She has also co-written a paper on how to work with teachers and the staff at school around children who stutter. In addition she was leading the project for some time, before starting her PhD in the EST project. In this week’s blogpost, we would like to tell you a little bit about the publication.

The new publication was put together by members of Nasjonalt Taleflytforum, a forum consisting of SLPs working with fluency disorders in Norway, lead by Statped. The network has previously worked with translations of assessment tools and preparation of information material. The idea of putting together a collection of articles for SLPs came in 2015. Since then an editorial board of four SLPs have worked with collecting articles from co-authors, commenting on them, and preparing them for publication. More than 10 SLPs have contributed to writing the articles.

The topic of the articles have been inspired by a survey the forum conducted among Norwegian SLP prior to starting the project. More than 50 suggestions to topics for articles came in. The need for new material on treatment in Norwegian was apparent! Up until now there has not really existed any practical handbooks or collections of articles in Norwegian about assessment and treatment of stuttering. With this collection SLPs in Norway will finally be able to access new and updated information about treatment, and best of all: it’s free online! (If you prefer to read from a printed hard copy, the publication can be purchased as print on demand here.)

Meeting with the EST reference group

In addition to the EST-project group, we have an advisory board and a reference group. The latter consists of representatives of institutions, organizations or groups of people that our research can be beneficial to. Importantly, an overall aim of reference groups is to involve the users of the research in the research projects and the research projects to benefit from the users experiences and knowledge about the topic under study. In the EST-project, collaboration with many of the representatives were established when drafting the grant proposal, however, we have also gotten some new representatives in the group throughout the two years that the project has been running.

The meeting this time focused on important design issues such as pre- and post-measures, inclusion criteria and collaboration in recruiting participants. The fruitful discussions with the reference group gave us new perspectives, possible solutions, but also some challenges to work further with.

I believe that I can say that I talk from everyone in the EST project group when I say that we are privileged to have such an engaged, knowledgeable and reflective reference group!

From the left: Elisabeth Holm Hansen (USN EST), Karoline Hoff (Statped), Martin Wright (NIFS), Ane Hestmann Melle (Statped), Melanie Kirmess (UiO EST), Kari-Anne Næss (UiO EST), Linn Stokke Guttormsen (UiO EST), Konstantinos Antypas and Hilde Hofslundsengen (HVL EST). Karianne Berg (Nord University) and Astrid-Tine Bjørvik (Statped midt, NTNU) joined on SKYPE.

An updste from the RCT-course

Then we arrived in Stavanger, the oil capital of Norway, on a day with a big jump in oil prices. However, no one in the RCT course was talking about oil. Everyone’s focus was on the research.

Nearly 20 researchers from different fields participated in the course, mostly PhD students but also others. Even an emeritus was among the participants. (I hope I will be as curious and eager to learn as him when I am his age.) However, it is not an everyday occurrence to have a visitor who is ranked among the world’s leading education economists.

It was a real pleasure to participate in Eric Bettinger’s lecture today. Different aspects were touched upon. They related to the components of an RCT (units, treatments, and outcome), mechanisms and counterfactuals (e.g. different outcomes from different dosages), selection bias (the one fulfilling the intervention differed from the one not fulfilling the intervention), the balance between the treatment and the control group for different non-manipulated variables (such as age, sex, etc.), the level of detail in the research question/generalization from the results (for a certain group of children at a certain age versus for all children) and the importance of theoretical justifications for a treatment for the advancement of the science.

Bettinger showed a great deal of enthusiasm through his pleasure, interest and engagement. He knows what he is talking about and gives a lot of examples from a variety of fields. Interaction was encouraged, and the lecture shifted between traditional teaching with well-designed PowerPoint slides (including nice references), training and discussions, which ensured variation and gave a feeling that the lecturing did not lasted too long, even if it was seven hours. Questions and comments were encouraged, and we were also given the opportunity to ask questions during the (approximately) 10-minute break. The language was clear, and the important points were stressed from different points of view. So Bettinger is not only a great economist but also a really great teacher and should we believe some of the existing research this may not be a too frequent combination.  A RCT-study from Netherland by Palali, van Elk, Bolhaar and Rud (2017) looked at the relationship between research quality and teaching quality and investigated if good researchers also are good teachers. They found that master students thought by teachers with high quality publications got higher grades. However, the student’s evaluation of the teaches did not fully reflected this since they were not ranked higher.

After today’s lectures, we took the bus back to Stavanger and went for a short walk to find our Airbnb house. After Indian takeaway food and some shopping (it is really cold here in Stavanger so I  had to buy a new jumper), we started our second task for today, namely to revise our questionnaire to the speech and language therapists, preschool teachers and health nurses. Finally, before we went to bed we did our homework.

I am looking forward to another course day tomorrow!

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Reference:

Palali, A., van Elk, R., Bolhaar, J., & Rud, I. (2017). Are good researchers also good teachers? The relationship between research quality and teaching quality. CPB Discussion Paper 347. Maastricht: CPB Netherlands Bureau for Economic Policy Analysis.

The detailed design process of a high-quality randomized controlled stuttering trial has started

Hilde, Linn, Åse and I are about to arrive in Stavanger to participate in a one-week course about randomized controlled trials (RCT) in social science at the University of Stavanger. The course is led by Eric Perry Bettinger from Standford School of Education, and we will actually be students for five days from 9:00 a.m. to 4:00 p.m. daily and have a reading list of seven pages full of references.

I am still a bit old fashioned when it comes to reading; I like paper versions of articles best so that I can make notes (e.g., inferences, comments, associations, questions) with a pen. I am aware of the latest technology, such as the Apple pencil that can be used to make comments by hand on the iPad, but I still prefer jotting down notes the old way. I do not know if it is because of my bad eyesight or the fact that it gives me a better overview of the text’s spatial landmarks and thereby reduces the cognitive load required to orient myself to the text. Or maybe it’s the depth of reading that is possible (e.g. effectively revisiting parts). It may simply be due to habit (reading rigidity). Luckily, the three others in the EST-team also prefer paper, so I am comforted by the feeling that I am not so outdated (read ‘old’) and it make me optimistic about my potential for learning the course materials. A systematic review of the research on the effects of reading media on reading comprehension by Delgadoa, Vargasb, Ackermanc and Salmeróna (2018) actually concluded that paper-based reading yields better comprehension outcomes than digital-based reading. So at least I could say that my preferred strategy is based on results from international research.

My thanks go to Linn and Åse for printing all the articles on the reading list and sending them to the Repro Central at the University for binding as books. They became no less than five “large books”, so then I knew what to do in the weekend. On Saturday, I opened the first book of articles and started to read enthusiastically Understanding and Misunderstanding Randomized Controlled Trials, by Deaton and Cartwright (2017). The content reminded me very much of the views on RCTs of a colleague at the University of Oslo, Tone Kvernbekk. She underlined RCTs pitfalls and the need for a combination of methods to determine what works and why.

On the one hand, the Deaton and Cartwright (2017) article critically highlights the pitfalls of the design of RCTs, such as potential confounders; on the other hand, it stresses the fact that other designs also have the same challenges in addition to their own. Therefore, RCT is still broadly considered to be the gold standard of designs. Neveertheless, the authors highlight the importance of having a realistic understanding of the strengths of RCT design and of its limitations and pointed to three common misunderstandings of it’s quality:

1)    Randomization ensures that the treatment and control groups differ only with regards to the treatment variable

2)    Randomization provides precise and unbiased estimates of average treatment effects

3)    Standard significant tests of RCTs are reliable

In addition, the athors underline the need for replication studies and complementary study designs to gain insights into the results of different samples and contexts and why the target intervention is effective and for whom (individual variations).

An update of our course experiences will follow shortly.

All the best,

Kari-Anne

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References:

Delgadoa, P., Vargasb, C., Ackermanc, R., & Salmeróna, L. (2018). Don't throw away your printed books: A meta-analysis on the effects of reading media on reading comprehension. Educational Research Review, 25, 23-38.

Deaton, A. & Cartwright, N. (2017). Understanding and misunderstanding randomized controlled trials. NBER working paper 22595. Cambridge: National bureau of economic research.

Norwegian speech pathologists’ treatment of young children who stutter

In June, Ane, Karoline and Kari-Anne and Linn published an article concerning Norwegian speech language pathologists’ (SLPs) treatment of young children (age 2-6) who stutter in the Norwegian journal Norsk tidsskrift for logopedi. Also, with the permission from the journal, the article was reprinted on the web page Utdanningsforskning.no. This blog post is a summary of the paper.

The majority of children who stutter will recover within school-age (Kefalianos et al., 2017; Månsson, 2000), however, few experience natural recovery within the first year after onset (Reilly m. fl., 2013). At present we are not able to predict who will experience natural recovery and who will persist to stutter and when natural recovery will occur (Clark, Tumanova, & Choi, 2017). Studies have shown treatment to be more efficacious in reducing stuttering in young children than no treatment (Harris, Onslow, Packman, Harrison, & Menzies, 2002; Lattermann, Euler, & Neumann, 2008). Given the abovementioned, treatment in young children is recommended. However, in Norway there are no national guidelines concerning stuttering treatment for young children.

Our study aimed at investigating how speech language pathologists in Norway treat young children who stutter. An electronic survey was carried out after approval by the Norwegian Centre for Research Data. Four main questions were asked in the survey. These concerned what kind of treatment approach SLPs used in treatment of young children who stutter (direct/ indirect/ a combination of direct and indirect/ other treatment), how often the different treatment approaches were given, the most often used indirect treatment (Palin PRS, Restart DCM, own developed of indirect direct strategies, other) and direct treatment (Westmead, Lidcombe program, fluency shaping techniques, stuttering modification techniques, other).

117 SLPs responded to the survey. The results indicate that the majority of SLPs use indirect treatment with young children who stutter. More specifically, the SLP’s own developed combination of different indirect strategies is used by most. Few report using indirect treatment programs such as Palin PCI (N=8) and Restart DCM (N=11) and direct treatment programs such as the Lidcombe program (N=2) and Westmead (N=0) most often. In summary, the results from our study highlight a discrepancy between the Norwegian SLPs practice and research evidence. Since there is no evidence for the treatment that is given most often by the majority of SLPs in the survey, future studies should target the effect of this treatment. Furthermore, to ensure efficacious treatment for young children who stutter in Norway, guidelines of stuttering treatment together with training in efficacious treatment programs should be implemented in Norwegian speech clinics.

References

Clark, C. E., Tumanova, V., & Choi, D. J. P. o. t. A. S. I. G. (2017). Evidence-Based Multifactorial Assessment of Preschool-Age Children Who Stutter. 2(4), 4-27.

Guttormsen, L.S., Melle, A.H., Hoff, K., & Næss, K-A.N (2019). Stammebehandling av barnehagebarn: norske logopeders praksis. Norsk tidsskrift for logopedi, 2, 6-13.

Harris, V., Onslow, M., Packman, A., Harrison, E., & Menzies, R. (2002). An experimental investigation of the impact of the Lidcombe Program on early stuttering. Journal of fluency disorders, 27(3), 203-214. doi:https://doi.org/10.1016/S0094-730X(02)00127-4

Kefalianos, E., Onslow, M., Packman, A., Vogel, A., Pezic, A., Mensah, F., . . . Reilly, S. (2017). The History of Stuttering by 7 Years of Age: Follow-Up of a Prospective Community Cohort. Journal of Speech, Language, and Hearing Research, 60(10), 2828-2839. doi:10.1044/2017_JSLHR-S-16-0205

Lattermann, C., Euler, H. A., & Neumann, K. (2008). A randomized control trial to investigate the impact of the Lidcombe Program on early stuttering in German-speaking preschoolers. Journal of fluency disorders, 33(1), 52-65. doi:https://doi.org/10.1016/j.jfludis.2007.12.002

Månsson, H. (2000). Childhood stuttering: Incidence and development. Journal of fluency disorders, 25(1), 47-57. doi:http://dx.doi.org/10.1016/S0094-730X(99)00023-6

Reilly, S., Onslow, M., Packman, A., Cini, E., Conway, L., Ukoumunne, O. C., . . . Block, S. (2013). Natural history of stuttering to 4 years of age: a prospective community-based study. Pediatrics, 132(3), 460-467. doi:http://dx.doi.org/10.1542/peds.2012-3067

Guest post: A research stay in Sogndal

As most members of the EST-project are having some well earned time of this summer, the EST blog will take a short break. As a last post before the holidays, we have asked Ria Bernard to be a guest on the blog! The PhD- student normally situated at the UCL have been working together with EST group member Hilde this spring. In this blog entrance she writes about her research and research stay. Thank you for sharing, Ria!

I first met Dr Hilde Hofslundsengen during her visit to University College London (UCL) in the autumn term 2018, when she was visiting my supervisor, Professor Courtenay Norbury’s, lab. Only a few months into my PhD, it was exciting to hear about the fantastic work Hilde was doing with the EST Project team and her passion for stuttering research.

My PhD is looking at whether there is an association between anxiety & depression and stuttering in children and young people. It is very much set in the context of preventative healthcare in terms of firstly identifying whether children who stammer are more likely to present with anxiety/depression relative to their non-stammering peers, and potentially identifying risk factors that could guide effective early intervention to offset later adverse mental health conditions in this population.

The first project in my PhD involves completing a systematic review of the literature that has explored anxiety and depression in young people who stammer. You can imagine how delighted I was when Hilde, with all her experiences within the EST project and beyond, agreed to co-author the review – and even more thrilled when she invited me to visit her at the Western Norway University of Applied Sciences to work on the review together!

In late May 2019, I arrived in the spectacular town of Sogndal. It was incredible to be surrounded by such breath-taking scenery while undertaking our research - and quite a change from the hustle and bustle of London. I was overwhelmed by everyone’s friendliness at the university and their ability to lapse effortlessly between Norwegian and English (amongst other languages!) over lunch in the staff canteen.

Following an initial literature search, we now settled down to the task of screening over 

13,000 articles. While overwhelming in the beginning, our persistence paid off and we managed to get down to just under 500 articles for the full text screening. With a week and a half to go, we worked hard to get through the second stage of the review process, each of us screening all 481 articles with a day to spare before I had to return to London. Exceeding the personal goals we had set for my four-week visit, I was very proud to be returning to UCL with 21 articles for the third coding stage of the review.

Alongside all the work on the review, I also managed to explore the stunning nature that Sogndal – and Norway – has to offer. From making the most of the long light evenings with mountain walks overlooking the Fjords to visiting Jostedalsbreen Glacier, nature offered a mesmerising solace from our computer screens. 

Hilde, making every effort to include me in the team, invited me to Bergen where I had an opportunity to be a tourist for a day, and to accompany her research team on their writing retreat in the most picturesque surroundings. Hilde’s colleagues were equally welcoming – inviting me to the cinema and to sample the cultural delights of the summer market in Lærdal. While we didn’t make it to Oslo, I was very pleased to meet Linn and Åse over a virtual coffee on Skype!

The last four weeks in Norway have been unforgettable and I want to say a big thank you to Hilde and her family for making me so incredibly welcome and giving me the chance to visit. Needless to say that having the opportunity to work side-by-side and systematically sift through decades of research literature had huge benefits not only for our project but also for me as a researcher learning from Hilde’s wealth of experience.

I hope one day I’ll have an opportunity to return!

Ria Bernard, UCL PhD student

My research is funded by ESRC UBEL DTP and Action for Stammering Children Charity