The following is the Letter of Informed consent for the Quick Strike 1 project entitled, “Children with complex health conditions – Let’s learn who they are and their needs to better serve them“.
Please read through the following and enter your name and relevant information. By submitting this form you are providing your informed consent to participate in this study.
Dr. Nicky Hyndman, Ph.D., Assistant Professor, Family Science Program, Department of Applied Human Sciences, University of Prince Edward Island, January 2016
I am part of a team of researchers conducting a study entitled, Children with complex health conditions: Let’s learn who they are and their needs to better serve them. I am inviting you to participate in my study. The overall purpose of this study is to interview PEI parents to explore their experiences in caring for children with complex health conditions and their families.
This study involves participating in an interview. This interview should take about 20-30 minutes to complete. This interview will be recorded, and later transcribed by myself, to ensure that the data are as accurate as possible and reduce misinterpretations.
There are no direct benefits to you from this study. However, the data collected in the current study will help inform the “needs assessment phase” of a larger ongoing NBCF-funded project entitled “New Brunswick Virtual Health Centre for Children” and a joint New Brunswick/PEI research project concerning Children with Complex Health Conditions. This project aims to offer better coordinated and integrated (health, social, and educational) care for children with complex health conditions and their families. This can help increase access to services for children with complex health conditions and their families, facilitate the work of the various healthcare providers, and reduce the financial burden and inconvenience of travel in/outside the province that they may experience.
There are minimal risks of participating in this study. The biggest inconvenience is the time it takes to complete the interview. Your participation is completely voluntary. You may withdraw from this study at any time without penalty. If any of the questions asked make you uncomfortable, you may choose not to answer them without repercussions.
I will delete the audio files immediately after transcription. I will remove any identifying information from these transcripts (ex. name, job title, etc.) before data entry. This will be accomplished by assigning participants a study code. Participants’ names will be attached to the study code in a document that is separate from the collected data. Only the research team members will have access to this document. The latter will be password and verification code protected whilst stored. The results of this study will be presented as a group and no individual participants will be identified without their permission.
If you have any questions about this study, please contact Dr. Nicky Hyndman (firstname.lastname@example.org; (902) 902-566-0528) and Dr. William Montelpare (email@example.com; 902-620-5186), Dr. Rima Azar (firstname.lastname@example.org; (506) 227-3932) or Dr. Shelley Doucet (email@example.com; (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 (firstname.lastname@example.org; (506) 364-2618) or Joy Knight, Research Compliance and Awards Coordinator at UPEI (email@example.com).
Please click here to link to the Letter of Consent submission form.