Special Olympics and Pediatricians

Increasing Participation in the Special Olympics: Are Pediatricians the Missing Link?

Researchers:
Rebecca Haworth, Medical Student, Dalhousie University, Principal Investigator
Kim Blake, MD, Pediatrician, IWK Health Centre, Co-Investigator
William Ross, BSc., IWK Health Centre, Research Assistant

Funding source:
This study is funded by a Special Olympics Canada Research Grant.

Introduction:
You are being invited to take part in a research study. This form gives you information about the study. Before you decide if you want to take part, it is important that you understand the purpose of this study. Taking part is entirely voluntary (your choice). Informed consent starts with the initial contact about the study and continues until the end of the study. The Principal Investigator of the research team will be available to answer any questions you have. You may decide not to take part or you may withdraw from the study at any time. You do not have to take part in this study.

Why are the researchers doing the study and How will it be done?
We would like to learn more about how families learn about Special Olympics, what barriers they encounter to accessing Special Olympics and how pediatricians can help families learn about Special Olympics. To answer this question, 300 participants will complete an online survey which asks questions about themselves and about Special Olympics. The survey will be different depending on if you are a parent of a child participating in Special Olympics, the parent of a child not participating in Special Olympics or a pediatrician/pediatrics resident.

What will I be asked to do?
We will ask you to complete an electronic survey accessed through Opinio which is an online survey tool. It is a secure tool which requires the research team to enter a password to see the results. The survey responses will be housed on servers at Dalhousie University. By completing the survey, you give your consent to participate in the study.

Who can participate?
You are eligible to take part if you are the parent of a child aged 2-21 who is currently participating in Special Olympics, the parent of a child aged 2-21 with an intellectual disability who is not currently participating in Special Olympics or a pediatrician/pediatrics resident.

What are the burdens, harms, potential harms and possible benefits?
We do not believe there are risks or harms for you in taking part in this study. If you become distressed while completing the survey you may stop at any time or move to the next question. During the survey we won?t ask you for any identifying information so that your privacy will be protected. There are no direct benefits for you if you take part in this study. However, the information gained from this study may help connect more children with Special Olympics programming.

What alternatives to participation do I have?
You do not have to participate in this study.

Can I withdraw from the study?
You may decide to stop participating in the survey at any time. If you stop entering survey answers before the second page, your information will be removed from the survey responses. If you have completed questions past the first page your responses cannot be removed because the researchers have no way of identifying your responses.

Will the study cost me anything and, if so, how will I be reimbursed?
There will be no costs to your family for being in this study. No reimbursement will be provided to participants. There will be six draws for $100 gift cards that you can be entered into if you wish.
If you wish to be entered into a draw for one of six $100 gift cards, please provide your email address.

Are there any conflicts of interest or possible profits from commercialization of the study results?
There are no conflicts of interest. No profit from commercialization of the results of the research are anticipated.

How will I be informed of study results?
Would you like to receive a summary of the study results? A summary will tell you more about why we did this research and what were the results of this study. Please provide your email in the box below.

How will my privacy be protected?
You will not be named in any reports or publications based on this research. If you would like to be entered in the gift card draw and/or would like to receive a summary of the research results your email will be kept separate from your survey answers. All of your information will be stored in a locked office or in password protected files on password protected computers at the IWK Health Centre in Halifax, Nova Scotia.

What if I have study questions or problems?
If you have any questions about this study, please feel free to contact Rebecca Haworth, the primary investigator at (902) 470-7709 or Dr. Kim Blake, the supervising co-investigator at (902) 470-6499.
1. Upon completion of the survey, would you like to be entered into a draw to win one of six $100 gift cards? If yes, please provide your email address. It will be kept seperate from your survey answers.
 
2. Would like to find out the results of the study? If yes, please provide your email address below. It will be kept seperate from your survey answers.
 
3. Would you like to be contacted about future research being conducted by Rebecca Haworth or Dr. Kim Blake? If yes, please provide your name and email address below. Your information will be kept seperate from your survey responses.
 
4. Which best describes you?
Parent/Caregiver  
Physician/Resident