QS 1 Background

Information sheet for Potential Participants
We would like to invite you to participate in our study, however before you agree to participate we would like you to understand why the study is being done and what it would involve for you. Please, feel free to ask questions if anything is unclear to you or if you would like to have further information.

What is the research question?
What services and programs are available to address the needs of children and their families with complex health conditions, including resource gaps and barriers to accessing care in NB and PEI?

Why have I been chosen?
You have been chosen because you are a parent or guardian of a child with complex healthcare needs or you are a community stakeholder that is directly involved with the delivery of services or provision of resources for children and families with complex healthcare needs; and you have either responded to an invitation by letter or advertisement or by word of mouth to information about this project.

Do I have to take part?
Participation in this study is entirely voluntary. If you decide to take part please, sign-in on the consent page. This requires access to the internet, but we would be glad to introduce you to the library internet services if you do not have access to the internet. Your e-mail will be requested during sign-in. This information sheet is yours to keep and is also available on the website, as is a copy of the consent form which you should read and agree to if you decide to participate in this study. You can save or print a copy of the consent form from the website for your records. We explicitly seek your consent for the use of direct quotations which will be anonymised. If you take part and change your mind, you have the option of withdrawing from the study at any point without giving any reasons. You could withdraw from the study using the withdrawal link or button on the website. If you withdraw we seek your consent to retain and use any data (anonymously, using a pseudonym).

Submitting responses is considered your virtual agreement to the terms of the study which are specifically noted as follows: All information collected throughout this study will remain confidential and securely stored using a firewall-protected secure server accessible via password for security and safety at the University of Prince Edward Island for a period of five years. You are NOT obligated to complete any forms, and may withdraw from the study at anytime without fear of reprisal.

What will I have to do if I agree to take part?
If you choose to participate we will ask you to sign the letter of informed consent and then to participate in a semi-structured individual interview which may take approximately 30 minutes depending on your views. The questions will relate to the issues about children’s complex healthcare needs.

Are there any possible disadvantages from taking part?
There are no reasonable foreseeable discomforts or risks involved in participating as you could respond to the web based interview at any time and place. If there is any unexpected discomfort, disadvantage or risk to you during the course of this research, please, bring it to my (Dr. Nicky Hyndman) attention to help you find support or use the link for support on the study website.

What if something goes wrong?
There are no known risks or harm with this research. If you are harmed by taking part in this research, there are no special compensation arrangements. If the harm to you is due to someone’s negligence, then you may have grounds for legal action but you may have to pay for it. Regardless of this, you may wish to complain or have any concerns about any aspect of the way you have been approached or treated during the course of this study, you may complain to the University secretary. The normal Research Ethics Board complaints mechanisms will still be available to you. If you wish to make a complaint, then please contact the any of the following individuals to gain information on how to proceed.

Dr. William Montelpare (wmontelpare@upei.ca; 902-620-5186), Dr. Rima Azar (razar@mta.ca; (506) 227-3932) or Dr. Shelley Doucet (sdoucet@unb.ca; (506) 654- 3419).

This research has been reviewed and approved by the Mount Allison University Research Ethics Board and the University of Prince Edward Island Research Ethics Board. If you have any questions or concerns about this study, you may contact Dr. Odette Gould, Chair of the Mount Allison University Research Ethics Board (reb@mta.ca; (506) 364-2618) or Joy Knight, Research Compliance and Awards Coordinator at UPEI (mknight@upei.ca)

What are the possible benefits of taking part?
There are no immediate benefits for those participating in the study, but the study will contribute to the knowledge base and inform policy. You may gain some personal benefits or support from writing or discussing your views with other participants.

Will my participation be kept confidential?
Yes, all information collected will be kept strictly confidential. You will be assigned a personal identification number (ID) or pseudonyms to identify your responses. Personal identifiers will be removed from responses during the analysis of the data and replaced with pseudonyms. During the study the researchers (Dr. William Montelpare, Dr. Rima Azar, Dr. Shelley Doucet, Dr. Nicky Hyndman, and Dr. Pat Charlton) will have access to your response data. Your ID and demographic details will be stored in a password-protected computer. Your anonymized responses will not be held together with your personal details. Data will be stored on the University of Prince Edward Island firewall protected secure server that is only accessible via password for security and safety. After finishing this study the data will be stored in the password protected computer at the University of Prince Edward Island for 5 years and then destroyed according to the University policy on data protection.

What type of information will be sought and why the collection of this information?
The information we need will be detailed responses to the semi-structured interview questions. This will enable the overall aim of the study to be achieved i.e. explore the influence of the service organization and delivery as offered in Prince Edward Island and the Maritime Provinces, where applicable, for Children and Families with Complex Healthcare Needs.

What will happen to the results of the research project?
A summary of the findings will be sent to all participants electronically and Health PEI. Findings will be published in academic journals and presented at academic and professional conferences.

Who is organizing and funding the research?
The study is sponsored by the The Canadian Institutes for Health Research and The New Brunswick Children’s Charities as part of the Strategies for Patient Oriented Research Quick Strike Research Program.

Who can I contact for further information?
If you have any further questions, please contact:

Dr. Nicky Hyndman, PhD, Department of Applied Human Sciences, University of Prince Edward Island
E-mail: nhyndman@upei.ca

Or contact Dr William Montelpare, University of of Prince Edward Island wmontelpare@upei.ca

You may copy this information sheet for future reference.
Click here for Letter of Informed Consent Page

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