WHY ARE YOU BEING INVITED TO TAKE PART IN THIS STUDY?
Dear Youth/Young Person and Guardian,A team of researchers across Canada are conducting a research project to explore the experience of youth with opioids and opioid-related services. The goal of the project is to develop youth-informed interventions and services that can be communicated to service providers and policy makers across Canada.If you agree, you will be participating in a Pan-Canadian youth summit that will last approximately 6 hours in Montreal. Please read this information to help you decide if you want to participate in this research project. It is important that you understand this information. We encourage you to ask questions. Please take all the time you need to make your decision. We encourage parents to include their child in the discussion and decision-making to the extent that the child is able to understand.In this research information and assent/consent form, “you” means you or your child.
WHY IS THIS STUDY BEING DONE?
There is currently a gap in services for opioid use prevention, specifically interventions and treatments for at-risk and newer or young users. In order to develop interventions and youth-informed guiding principles for opioid use interventions, we are conducting a pan-Canadian youth summit.
The goal of the summit is to allow youth to present the existing evidence about interventions to their peers and to develop ‘new’ youth-informed interventions and guiding principles. In collaboration with youth, the summit seeks to identify actionable levers of change and to communicate youth needs and guiding principles to service providers and policy makers.
WHAT WILL HAPPEN DURING THE SUMMIT?
If you agree to participate, you will be invited to a summit on January 25, 2020 lasting approximately 4 hours (i.e. from 12:00 PM to 4:00 PM) at the research center of CHU Sainte-Justine in Montreal.
During the summit, you will participate in breakout group discussions and attend presentations by your peers and experts on evidence about interventions and treatments. You will also be invited to participate in audio-graphic/visualization activities about your perceptions and ideas on making interventions for new users to be more responsive and adequate for youth-needs. Through the youth summit, you have the opportunity to be involved, with participants of your age, in workshops for the creation of new guiding principles, philosophies and tangible strategies that will be useful to translate your ideas to experts, policy makers, and service providers across Canada. A demographic and substance use questionnaire will be handed out to you at the youth summit. The discussions will be recorded using a digital audio device and then transcribed to allow us to analyze faithfully the exchanges. The initiation and conclusions of the event will be connected via audio-video. The purpose of this connection is to unify the groups across the country during the youth summit activities. None of the participants’ faces will be revealed during the video graphic connection. The videoconference will be contained to the research sites and will not be broadcasted anywhere else.
The day is separated into three activities:The first activity at the summit will involve listening to a presentation of the most up-to-date information on evidence-based interventions for youth who are at-risk of opioid addiction and use.
The second activity will involve listening to a presentation of sample intervention vignettes. Different vignettes will be presented to different break-out groups. The break-out group will then have a discussion about how and in what ways these interventions could be made more youth-friendly or responsive to youth needs. The break-out groups will then present their new and improved vignette to the entire group.
Lastly, the break-out groups will convene to discuss/make a list of guiding principles and philosophies for youth-informed interventions and services and identify actionable levers of change that could help implement these changes and improvements. The groups will share these principles and philosophies with the entire group and will engage in ‘graphic/audio visualization’ of these principles and philosophies in order to preserve anonymity of the youth summit participants. The entire group of youth will convene at each site and vote using a real-time polling technology to identify the ‘best’ principles and guiding philosophies.
HOW MANY PEOPLE WILL TAKE PART IN THIS STUDY?
About 30 participants will take part in this study from across the area of Montreal. About 150 participants from here and elsewhere in Canada will take part in this research study.
WHAT ARE THE RISKS?
There are no demonstrated or anticipated physical risks to being involved in this study. Potential psychological risks are minimal and could involve possible discomfort from responding to questions about one’s substance use and/or related emotional states. You can choose to not respond to one or many questions at all times. There are no potential risks to privacy during the videoconferencing of the summit. Only research investigators will be elected to feature on the video conference. Researchers will spend ample time setting up the videoconferencing equipment beforehand. The only inconvenience associated with your participation is the time you will devote to the study.
WHAT ARE THE BENEFITS OF PARTICIPATING IN THE PROJECT?
There is no direct benefit to you for participating in this research. Your participation will contribute to a better understanding of the needs of youth at-risk of opioid addiction and/or other substance use and to developing new and unique youth-informed interventions in collaboration with young people across the country. Additionally, information gathered through your participation will contribute to the development of new interventions that will be presented to service providers and policy makers across the country.
You will receive $ 50 CAD to reimburse you for inconveniences as a result of your participation. All your travel to-and-from the summit expenses and dinner during the summit with your peers will be covered.
IS YOUR PARTICIPATION VOLUNTARY?
Yes. Participation in every aspect of the project is voluntary and you are invited to refrain from answering any questions that may cause you discomfort. Your participation in the project is entirely voluntary and you can withdraw from the study at any point, without having to provide reasons. At which point all data provided by you will be immediately destroyed. If you decide not to be in this study, or to stop participating in the study later on, this will not affect the quality of care you receive from your doctor.HOW IS PRIVACY ENSURED?All information collected will remain completely confidential as required and permitted by law. All personal information will be protected by replacing names with research codes that will be securely stored under the responsibility of the principal investigator at the Sainte-Justine Hospital. Only authorized research team members will have access to the code linking your name to this number. In order to ensure your protection and the quality control of the research project, the following organization could consult your research record:The research ethics committee of CHU Sainte Justine; This organization adheres to a confidentiality policy.
If information from this study is published or presented at scientific meetings, your name and other personal information will not be used.The principal investigator at your hospital will be responsible for securely storing all the research data including audio file for 7 years.
WHOM DO I CALL IF I HAVE QUESTIONS OR PROBLEMS?
If you have any questions or concerns about the Youth Summit you can contact the lead researcher in Montreal:
Dr. Patricia Conrod:
(514) 345-4931 (ext. 4051)
Centre de Recherche, CHU Ste-Justine
3175 Côte-Ste-Catherine, Montréal, QC, H3T 1C5
If you would like information about your rights related to your participation in the research, you may contact the hospital Ombudsman (Patient Representative): CHU Sainte-Justine: 514-345-4749.