November 2019    
Greetings FER Course students and Fellows!

It's been an absolute pleasure to read your posts on A2L and to listen in on Zoom with all your insights! I wanted to create a newsletter as an opportunity to begin to share some resources or upcoming opportunities.

I wanted to share once more that if you have any questions or wish to talk about anything about the course, or about any of the work that Kids Brain Health Network does please don't hesitate to connect with me at lukesbloggermom@hotmail.ca

Parents: I am here for you if you have any stresses going on, if you need someone to advocate on your behalf. Please don't hesitate to connect with me! I am here to help you move forward beyond this course and help you begin to find your connections to researchers!

Trainees/Researchers/Clinicians: If you wish to discuss further in regards to what methods you can take in regards to community outreach, I'd be happy to set up a Zoom meeting. Please don't hesitate to connect with me.

If you are in the Ottawa area this December, would love to see you at the Kids Brain Health Network Conference. Parent partner pricing is only $75 for the two days. If you do come, please get in contact with me as I would love to meet you in person! Your first research conference as a partner can be a little overwhelming. I would be happy to chat and be a buddy through the experience. You can learn more at: https://kidsbrainhealth.ca/index.php/what-we-do/conferences/

Moving forward, this newsletter is a new concept to the course. Should you have any suggestions as to what sort of resource you would value with this, we are more than happy to extend this to add other things.

Cheers!

Rachel Martens

Engagement Officer

 
Client and family engagement in research can be challenging... 
Let's Learn Together how to support each other!



Participate in a research study to create simulations to support clients and family engagement in research.

We are seeking researchers, trainees, staff members, parent/caregivers of an individual, or youth with, a childhood disability (ages 16-29) or acquired injury who have partnered on research studies.

As part of this study, you will be part of a team developing five simulations for research teams and patients to learn how to support each other through challenging situations associated with partnership in the research process. This study involves participating in a one-time, approximately 5-hour workshop. In this study, participants work with one of each a researcher, trainee, staff member, parent, and youth to share individual stories around one challenge related to partnering in research and work with Standardized Patients to build and videotape a common story "simulation". Additionally, participants may be asked to consent and participate in 1 follow-up 1-on-1 interview. Lunch and light refreshments will be provided as well as TTC tokens and/or cost of parking.

Please see the attached poster to see you if you are eligible to participate or contact Samantha at 416-425-6220 xt. 3704 for more information.

If you have questions, please do not hesitate to contact me at smicsinszki@hollandbloorview.ca


Attention Parents!
We are looking for parents in this course who would be willing to share their lived experiences as a research partner for our KT project. If you are interested, please reply to this thread with your answers to these two questions:

1. How does my lived experience inform the research question and study?
2. Can I give advice to overcome any barriers?

If you would like to help but would like your responses to stay confidential, please feel free to email me at Meghan.ford@sickkids.ca

Get involved in a research study!

A team at SickKids is creating a series of online educational modules about patient-oriented research. This type of research focuses on patient-identified priorities and involves patients and families as equal partners in the research process. In order for this type of research to be successful, training for both patients and families and researchers is required. The modules being developed, called PORCCH (the Patient-Oriented Research Curriculum in Child Health), have been designed for this purpose. The PORCCH team is looking for individuals to go through two PORCCH modules - (1) What is health research and who is involved? and (2) Timeline of a research study - and provide feedback on them. You are not required to have experience with patient-oriented research to participate.

If you agree to be part of this study, you will be emailed a link to the modules and feedback questionnaires. The study involves completing the modules, answering some questions about patient-oriented research, and providing feedback on the modules. You can complete the study at any time on a computer, tablet, or smartphone that is connected to the internet. Participation in the study takes about 1 hour, and participants will be compensated for their time in the form of a $20 gift card of their choice (e.g., Tim Hortons, Shoppers Drug Mart, or Indigo). In addition, a certificate in recognition of completed volunteer hours can be provided upon request. Thank you for your time and consideration!

If you are interested in participating please contact Graham McCreath, the PORCCH research assistant, via email at graham.mccreath@sickkids.ca or phone at 416.813.7654 (x309445).

Research Panel Event
If you have a particular interest in autism, this may be an interesting opportunity to learn more about who works in this field.
Kids Brain Health Network (KBHN) and the Autism & Intellectual-Developmental Disabilities National Resource and Exchange Network (AIDE) are partnering to offer a research panel event available across Canada. The event will showcase the journey of KBHN-funded researchers in the development of solutions for children with developmental disabilities and their families.

Date: November 27, 2019
Time: 12:00 - 1:00 pm PST
Location: Pacific Autism Family Network or via Live Stream
Onsite Address: 3688 Cessna Dr, Richmond, BC
Live Stream Times Across Canada:
1 pm MST
2 pm CST
3 pm EST
4 pm AST
4:30 pm NST





Canadian Anti-Spam Legislation
You are a member of the Family Engagement in Research electronic newsletter generated by CanChild at McMaster University. If you believe that you should not be a recipient, you may withdraw your consent to receive these messages at any time, in accordance with Canadian Anti-Spam Legislation (CASL) and subject to McMaster University policy, by contacting the sender of this message, or by clicking on the 'SafeUnsubscribe' link at the bottom of this newsletter.