Some Stutter, Luh!

by The Communication Collaborative

Join host, Greg O'Grady, and his guests for a weekly dose of speech, language and what it's like to live with a communication impairment. Some Stutter, Luh! is Newfoundland and Labrador's first podcast about living with communication differences. We speak directly to people living with speech and language challenges, and others such as speech language pathologists, researchers, educators and family members. We use inclusive language and themes to help rebuild confidence and hope by dismantling myths, stigma, stereotypes and barriers.

You are invited to complete a survey about the accessibility of services for people who stutter (PWS) in Newfoundland and Labrador. This survey is conducted by The Communication Collaborative, which is a cross-sector group of people who stutter (PWS), members of provincial government, public-school teachers, early childhood educators, speech-language pathologists (S-LP), academics, university students, mental health professionals, disability advocates, and members of the Newfoundland and Labrador Stuttering Association (NLSA). We are all brought together around a common goal to address the current needs of people who stutter in Newfoundland and Labrador.

Please continue if you are:

  1. a person who stutters (PWS) living in Newfoundland or Labrador
  2. a parent or primary caregiver of a PWS living in NL
  3. a speech-language pathologist working in NL
  4. an educator working in NL

If you identify as a member of one of these groups, and wish to take the survey, please click on the appropriate link in the list above to access the relevant survey page. Once there, follow the instructions to provide your informed consent and complete the survey.

The survey takes between 15 to 45 minutes to complete, depending on which category you fall into.

Please note: we have received approval from the NLESD (Newfoundland and Labrador English School District) and our regional health authorities for their employees to complete these surveys.

If you would like further information before you decide to participate, please read the following or contact the Principal Investigator, Dr. Paul De Decker, at [paul DOT dd AT mun DOT ca].

What is this project about?

This project has four goals: 

a) to determine how many PWS live in NL. We currently do not know this basic fact about our province.

b) to understand what services are available for Preschoolers (1-5yrs), school age (6-13yrs), adolescents and adults (14-85 plus) who stutter, and identify any gaps in this system.

c) to gauge awareness of resources available to PWS.

d) to assess needs and access to resources for speech-language pathologists, early childhood educators, teachers, guidance counsellors, and health clinicians.

What will you do with my survey responses?

Data collected will be used in the following ways: 

a) as evidence to identify deficits in intensive / specialized programs and services. We believe that this will help identify / reduce / eliminate barriers to the existing, limited clinical programs, services and supports in NL. 

b) to advocate for government funding to research and establish the identified needed intensive / specialized programs, services and supports for PWS in our province. We also want to develop workshops/guides for participants to understand concealable social identities commonly held by PWS, and any mental health concerns that often go along with them. SLPs, ECEs, PWS, and community members will develop skills to become aware of the role of stigma associated with non-standard ways of speaking.

c) to identify other issues related to support and services that will require future research or surveying.

Will my answers be anonymous and confidential?

We are not collecting any personally identifiable data (e.g. names, addresses) from you. In this respect, your identity will remain anonymous. There are questions that ask about age, gender and other demographic information that will help us tailor the survey to your own experiences. If you leave these questions blank the website will prompt you to complete them. These questions cannot be skipped but if you do not wish to provide an answer you may choose to exit the survey. Closing the browser will result in an incomplete survey which will be deleted from our database. There is no penalty for withdrawing from the survey.

All response data will be stored online through the Qualtrics website. Your responses will be stored in a password protected database. No personally identifiable information will be linked to your responses.

Because of the methods used in this study, i.e. an online survey, no signed consent forms will be produced.

Data will be kept indefinitely but for a minimum of five years, as required by Memorial University’s policy on Integrity in Scholarly Research. The NLSA will have access to the summarized data in its aggregate form. Data collected from the survey will be used for stuttering advocacy by the NLSA and may be used for research analysis and/or output as presentations at scholarly conferences and publication in academic journals.

We will produce a final report that highlights any significant findings from the survey. Where appropriate, we may paraphrase information shared with us through the survey. This report will be publicly available and accessible from the project webpage at somestutterluh.ca.

What else should I know?

You are free to not take part in this survey with no penalty to you. There is also no direct benefit to you as an individual in responding to this survey though we hope that this research will lead to improved access to services for PWS and help early childhood educators, teachers, parents, and speech language pathologists in their ability to assist PWS. 

For some people, some questions that ask about negative experiences related to stuttering may cause them to feel uncomfortable. These questions are not required so if you do not wish to provide an answer you may choose to skip those questions. There is no penalty for choosing to not answer such questions.

If you experience any negative psychological discomfort please contact the Mental Health Crisis Line: 709-777-3200 or Toll Free 1-1888-737-4668.

If you choose not to take part in this survey, it will not affect your relationship with the Newfoundland and Labrador Stuttering Association.

You are welcome to ask questions before, during, or after your participation in this research. If you would like more information about this study, please contact Dr. Paul De Decker: pauldd@mun.ca.

The proposal for this research has been reviewed by the Interdisciplinary Committee on Ethics in Human Research and found to be in compliance with Memorial University’s ethics policy. If you have ethical concerns about the research, such as the way you have been treated or your rights as a participant, you may contact the Chairperson of the ICEHR at icehr@mun.ca or by telephone at 709-864-2861.