Early Stuttering Conference: Advances in Diagnosis and Management

 

Vi arrangerer Early Stuttering Conference: Advances in Diagnosis and Management i samarbeid med Melbourne University i Melbourne 22. november 2024. 

Konferansen begynner kl. 10:30 og slutter kl. 17:30 (lokal tid i Melbourne, Australia). Tidsforskjellen mellom Australia og Norge gjør det vanskelig å overføre konferansen direkte. Vi kommer tilbake med mer informasjon om hvordan vi vil gjøre innholdet fra konferansen tilgjengelig for dere.

Foreløpig program:

11:00 AM: Åpning (Elaina Kefalianos)

11:10 AM: Roles and Goals of Stuttering Therapists in the Era of Neurodiversity (Scott Yaruss) 

11:40 AM: Operationalization of Stuttering (Linn Stokke Guttormsen og Kari-Anne Bottegaard Næss) 

12:00 PM: Progress in Understanding the Genetics of Stuttering (Ange Morgan)

12:30 PM: Tittel kommer (Sarah Horton)

12:50 PM - 1:30 PM: Lunsj

1:30 PM: A Phase II Trial of the Oslo Stuttering Treatment (Linn Stokke Guttormsen og Kari-Anne Bottegaard Næss)

2:00 PM: Parents' Perception of Their Children's Anxiety Symptoms and Stuttering Impact Before and After the Oslo Stuttering Treatment Trial (Hilde Hofslundsengen)

2:15 PM: Parental Implementation of Treatment Strategies in the Oslo Stuttering Treatment (Kristina Tufteskog Spanne)

2:30 PM: Tittel kommer

3:00 PM: Pause

3:20 PM: School-Aged Intervention (Georgie Johnson)

3:50 PM: Tittel kommer

4:20 PM: Tittel kommer (Marie Christine Franken)

4:50 PM: Paneldiskusjon 

5:20 PM: Avsluttende kommentarer

Følg med på bloggen vår for ytterligere informasjon.

 

Launching of the Top 10 Research Priorities in Stammering at UCL

Hilde Hofslundsengen and I was lucky to be invited to the launch of the Top 10 Research Priorities in Stammering at University College London arranged by the Action for stammering children in the United Kingdom.

 

The Top 10 research priorities were a result of a James Lind Alliance Priority Setting Partnerships that aimed to bring the person who stammer and his or her family, caregivers and clinician groups together and decide on priorities for future stammering research.

The project included in total three steps; first two surveys and a workshop. 146, 180 and 22 participants took part in each steps respectively. The scope focused on children and youth up to 25 years. Participants were recruited through newsletters, word of mouth, social media, events and clinical waiting rooms.

The results were as follows:

 The Top 10

1. What are the most effective forms of speech therapy for children and young people who stammer to give the best long-term outcomes?
2. How can parents and family members best support children and young people who stammer? How can parents and family members best be trained and supported to do this?
3. How can teachers in schools best support children and young people who stammer? How can teachers best be trained and supported to do this?
4. What are the emotional and psychological impacts of stammering on children and young people who stammer (e.g. low self-esteem and depression)? How are these best treated and supported?
5. What causes children to develop a stammer in early childhood?
6. Are other brain-related conditions (for example autism and ADHD) linked to stammering? What impact do these have on stammering?
7. What impact does stammering have on children’s and young people’s performance at school? How does this affect their prospects for further training, education, and employment? What forms of support would be of most help?
8. What is the most effective therapy and support for very young children who stammer (pre-school)?
9. What triggers stammering to increase in children and young people in different situations e.g. anxiety or excitement? How is this best managed?
10. How does a child’s emotions and personality affect the impact of a stammer? Does helping a child to manage their emotions reduce the stammer and its impact?

 

Ria Bernhard, the chief executive officer of Action for stammering children presented the priorities and the 2 1/2 years of work process behind them. Thereafter, a panel discussion took place. The Panel discussion focused on the impact of the Priority Setting Partnerships for researchers, funders, and the stammering community and was conducted by Kate Watkins, Professor of Cognitive Neuroscience, University of Oxford, Phoebe Avbulimen, ASC Youth Panel and member of the partnership steering group, Rebecca Maeso, Assistant Director, James Lind Alliance (NIHR). In the panel discussion it was raised several questions, e.g. possible differences in prioritisation across individuals who stammer depending on age, stammering severity and life situations were discussed. It was clarified that children and youth who stammer mainly was interested in outcome, e.g. how to make friends, succeed in jobs, interviews etc. while parents were most interested in support. Other interesting comments raised were “what is meant by the most effective treatment program”? and “What defines the focus of the therapy and what defines the best outcome as it will probably be different for different people”? The panel discussant answered these questions and underlining that the nature of the method used for the Top 10 prioritization is shared rankings –listening to all the participants different perspectives and it will be up to researchers to define and describe the different variables.

The panel discussion was followed by a Workshop to reflect on the priorities presented and how they can be put on the research agenda and translated into research. We were lucky to collaborate with Hope Kightley and Sarah Millard from the Michael Palin Centre, Jessica Lane from Royal College of Speech and Language Therapists, and Zhuxung Yang from University College London.

We had some nice discussions related to ongoing studies and future ideas.

Finally, there were a Networking reception with the possibility to continue the conversation. We got the possibility to talk to many nice people both people who stammer, practitioners, and researchers. I found the research on brain imaging by Dr Charlie Wiltshire from Bangor University in Wales interesting, and we decided to keep in touch regarding features of stammering.  

Unfortunately, we did not get the chance to talk to Professor Pete Howell, but we will hopefully get the chance another day during our stay here.

In the evening, we celebrated the priorities and our stay at UCL with colleagues with an absolute fantastic dinner at Darjeeling Express. Thanks for a lovely day and a lovely meal!

 

Kari-Anne

 

Happy Belated Stuttering Awarness Day!

 

På lørdag, 22. oktober, ble Stuttering Awarness Day markert over hele verden.

I den anledning vil vi gjerne tipse om denne NRK-saken som kom samme dag. NRK skriver her om opplevelsen av stamming, informasjonsbehovet blant lærere og mangel på logopeder. Saken finnes også på samisk!

Bildet er hentet fra NKRsaken (https://www.nrk.no/spesial/sebastian-zalo_-halvor-schultz-og-mette-h.-sakariassen-stammer-_-forskere-vet-ikke-hvorfor-1.16135150?fbclid=IwAR1h35GxoUwmmJwaNfmX9640gKPozAAHxo4IZc5GCddMyCtoX5RlhMVw6jA) 

Presentation at Nifs’ annual meeting and conference

 Nifs is the national interest organization for people who stutter and clutter in Norway. It is an active organization that has done much important for the field of fluency disorders in Norway. For instance, they have arranged conferences with highly recognized experts such as David Shapiro and Scott Yaruss and annual camps for youth and family weekends, they have developed information brochures, and are an important voice in political discussions concerning speech therapy and rights for people who stutter and clutter (for more information, see: https://www.stamming.no/logopedbehandling-stamming-lpsk-tale). We are also so lucky to have a representative from Nifs in our reference group. In the mid of March, Kari-Anne and I were invited speakers at Nifs’ annual conference.

We had many topics to cover in our presentation; recent publications such as the Cochrane review (http://theestproject.blogspot.com/2021/09/new-publication-from-est-team.html), the surveys with kindergarten teachers and health nurses (http://theestproject.blogspot.com/2021/09/norsk-publisering-helsesykepleieres.html), the review of implementation quality in stuttering interventions (http://theestproject.blogspot.com/2021/12/implementasjonskvalitet-i.html). This resulted in many fruitful discussions concerning treatment options for young children and stuttering recovery. We really appreciated presenting for such an engaged audience! Thank you so much for this opportunity Nifs, we hope to be invited again for further discussions and presentation of updated results!

                                            

Stuttering may be associated with increased anxiety in some children and adolescents

By PhD student Ria Bernard, UCL

 

At the end of January 2022, we published a new study in the Journal of Speech, Language and Hearing Research following an exciting collaboration between University College London (UCL) and the Western Norway University of Applied Sciences. The study systematically reviewed the literature and analysed findings from 11 studies that had compared anxiety and depression symptoms in children and adolescents (2-18 years) who do and do not stutter.

This project has been a little while in the making – starting when Dr Hilde Hofslundsengen joined UCL as a visiting researcher at the end of 2018! I was last invited to contribute to this blog after my stay with Hilde in Sogndal in May 2019, so I was delighted to be asked to share the study findings now our article has been published!

 

There were several take-home findings from this meta-analysis that we hope will inform clinical practice, future research and benefit young people who stutter.

 

Firstly, although there was substantial variation in reported anxiety symptoms across studies, overall, children and adolescents who stutter report higher anxiety symptoms than peers. At first glance this may not seem that surprising given the elevated risk for anxiety and social anxiety disorder reported in adults who stutter. But the high variability across studies is noteworthy.

 

Secondly, the high variability in outcomes mean that not all young people who stutter experience anxiety. We suggest that elevated anxiety may reflect other risk factors such as exposure to bullying, access to therapy, or family history of anxiety and depression, which may increase risk or resilience in children and adolescents who stutter. Unfortunately, few studies reported these additional variables, so it is currently unclear what factors contribute to this increased risk.

 

Thirdly, there were too few studies investigating depression to reliably comment on risk in young people who stutter. This highlights the need for more research, especially given the co-occurrence of anxiety and depression in the general population.

 

However, our findings do indicate the need to carefully monitor the mental health and well-being of children and adolescents who stutter. Ideally, in future, longitudinal studies that follow large groups of children who stutter over time would help us understand the association between stuttering and anxiety over the course of development.

 

If you would like to read more about this study, you can access it here: https://pubs.asha.org/doi/10.1044/2021_JSLHR-21-00236

 

It’s been an amazing experience collaborating with Hilde and Professor Norbury on this study, and I look forward to working together again soon!

 

We would like to thank our funders the Economic & Social Research Council (ESRC), Action for Stammering Children Charity and the Research Council of Norway for supporting this work.

Meeting with the reference group

 
Around twice a year the EST-project group meets with its reference group. The group consists of representatives of institutions, organizations or groups of people that our research can be beneficial to. The EST project met with the reference group the 13th of December, for an update and discussion about our ongoing work

The meeting started off with an introduction to the latest publications from the EST project, as well as an overview of planned papers. As to the latest publications, you can read about some of them here, here, here and here. It’s been a productive year!

Further, we discussed the ongoing multiple single case (MSC) study, and aspects related to implementation of stuttering treatment that we have experienced in the study. This relates to parents conducting treatment at home, the dosage of treatment, the length of a clinic visit, and experiences with clinic visits online. The members of the reference group provided helpful insights to this matter.

This summer, two students at the master program in Psychology at the University of Oslo conducted interviews with parents in the MSC study before they started EST intervention. One of the students presented their work for the reference group. The interviews was included in their master thesis, which was just finished this fall. Hopefully the results will also be published in a scientific paper next year, the work is in progress from several of the EST team members. 

Finally, the upcoming RCT in the EST project was the topic of the discussion. Recruitment strategies and how to end a study was some of aspects we talked about.

The EST project would like to thank the reference group for helpful and motivating inputs to our work. Further, we would like to use the last blogpost of the year to wish all collaboration partners and readers a very Merry Christmas!

See you all in 2022!

On behalf of the EST-team,

Åse and Linn 

Implementasjonskvalitet i intervensjonsforskning – hva er det og hvorfor er det så viktig?

En intervensjonsstudie har til hensikt å undersøke om et tiltak eller et behandlingsprogram har effekt. Virker det - og i så fall, hvor godt virker det? For å undersøke dette kan det gjennomføres en randomisert kontrollert studie (RCT) eller en kvasi-eksperimentell studie. Begge disse forskningsdesignene kjennetegnes av at deltakerne kartlegges før intervensjon (pretest) og etter intervensjon (posttest), og så sammenlignes resultatene.  I et design som RCT (som vist i figuren her), så randomiseres utvalget til å få tiltaket eller ikke få det, og denne tilfeldige fordelingen gjør at vi kan sammenligne gruppene selv om det er ulike personer med i dem, og si noe om hvilken effekt tiltaket ser ut til å ha.

Imidlertid er det ikke bare forskningsdesign som har betydning for om vi kan si at tiltaket har effekt. Vi må også vite noe om hva som faktisk har skjedd i tiltaksgruppen, vi må undersøke hvordan intervensjonen har blitt implementert, altså iverksatt. Implementasjonskvalitet består av:

•  Intervensjonen selv (slik som protokoller/manual, opplæring)
• Støttesystemet rundt intervensjonen (slik som undersøkelse av fidelity (trofasthet til tiltaket) med overvåkning av kjerneelementer i intervensjonen for å sikre standard levering)

Dersom det ikke er gitt god opplæring eller laget en tydelig plan (manual) for hva som skal gjøres i tiltaket, gjør kanskje logopeder (eller andre som gjennomfører tiltaket) det slik de tror selv det er best. Da kan det bli svært ulik gjennomføring og vanskelig å si noe etterpå om hva som virket. Kanskje ble det planlagt 20 økter over 5 uker og så ble det bare gjennomført 10 økter – det kan ha betydning for om tiltaket har hatt effekt. 

Implementering er viktig. I verste fall kan det se ut til at intervensjonen ikke virker, men så er problemet at det ikke ble gjennomført lenge nok eller på den tiltenkte måten. I litteraturen kalles antall økter, varighet og frekvens for dose (etter medisinsk forskning). I språkforskning kan dose  også handle om antall ganger et ord blir repetert av barn eller voksen. Se en interessant artikkel av Frizelle og kollegaer (2021) for mer forskning om dose. For å få vite hva som faktisk har skjedd må vi følge nøye med på hva som skjer i intervensjonsgruppen – og i kontrollgruppen! Noen ganger kan kontrollgruppen bli for inspirert av å være med, slik at det skjer saker og ting i kontrollgruppen som gjør at effekten av intervensjonen ikke vises.

I EST-teamet har vi akkurat publisert en artikkel om implementasjonskvalitet i stammebehandling. Gjennom å undersøke tidligere forskning har vi funnet at intervensjonsforskningen på stammebehandlingsprogram for barn og ungdom er ganske gode på å beskrive ønsket dose og opplæring av foreldre, men at det er få studier som har undersøkt hva som faktisk har skjedd når foreldrene har gjennomført behandling. Det var også vanskelig å vite hva slags opplæring logopedene fikk før de gjennomførte de kliniske behandlingene. Det gjør at det kan være variasjon mellom hva som står i de ulike programmanualer og det som faktisk skjer i behandling. Da vet vi ikke hva som egentlig fører til økt taleflyt. Det betyr at vi trenger flere grundige studier for å få bedre kunnskap om stammebehandling.

Om du har tid nå i julestria, så les gjerne artikkelen vår her. Det er open access så alle kan lese gratis. Vil du ha mer kunnskap om implementasjon, så rett før vår artikkel kom ut, har Bergþórsdóttir og kollegaer på Island publisert en artikkel innen samme tema. Det er tydelig at dette er et særs aktuelt tema i forskningsverden nå! 

Ta vare på hverandre!