Seeking Black youth living with Sickle Cell Disease and their family members to share experiences with virtual care
Activity Details and what to expect:
We are looking for Black youth aged 12-25 with Sickle Cell Disease and their family members to share their experiences and insight on virtual care (i.e. accessing medical care virtually, for example over text, phone, or computer). Specifically, we would like to learn more about what is needed to ensure virtual care is inclusive and accessible for Black youth living with pain and their families.
This team is looking for 6 youth (12-18), 6 young adults (18-25), and 6 family members or caregivers to join a virtual session. In order to participate, please send an email stating your interest and telling us a little bit about yourself and your experience with chronic pain to firstname.lastname@example.org
How much time will it take? Approximately 1.5 hours:
- November 28 @ 11am-12:30pm
- December 2 @ 6pm-7:30pm
- December 5 @ 11am-12:30pm
Can it be done from home? Yes, within Canada. An Internet connection and access to the device is helpful to participate, however, you can also participate by phone.
Project title: Ensuring equity and inclusion in virtual care best practices to support diverse populations of youth with chronic pain
Background about the project
The goal of this project is to engage diverse pain populations, specifically Black youth living with painful sickle cell disease, Indigenous youth with pain, youth with pain and complex medical needs, and their families in discussion sessions about virtual care and explore how to ensure virtual care meets the needs of these diverse groups of youth. We hope that the results from this work will help to improve virtual pain care and management for youth living with chronic pain.
This project was developed with and is being co-led by team members with lived experience of Sickle Cell Disease pain. The Sickle Cell Awareness Group of Ontario is a partner on this project. This project is funded by the Ontario SPOR (Strategies for Patient-Oriented Research) Support Unit, an organization jointly funded by the Government of Ontario and the Canadian Institutes for Health Research. Researchers from across the country, specifically from the University of British Columbia, the University of Calgary, and the Hospital for Sick Children in Ontario are leading this project.
As a participant, you would be asked to join a virtual dialogue session and share your insights and experiences with a facilitator via Zoom. These sessions will be facilitated by Sickle Cell Disease community members (i.e. person with lived experience, family members, community organization representatives, etc.).
Who should I contact if I’m interested or have questions?
Sickle Cell Disease Awareness Group of Ontario at email@example.com