In this week’s guest blog, we share news of the first project to be supported for funding through the BC SUPPORT Unit Patient Engagement Methods Cluster. Project co-lead Dr. Shelly Ben-David and team describe how their research will advance understanding of the gaps between online knowledge availability and access, or the ‘Digital Divide’, in diverse youth with mental illness. This project is dear to our hearts, as it represents the continuation of the work of Sandra Dawson, who, as some of you may know, was a CREST.BD peer researcher and friend who died from cancer last year. Sandra’s legacy lives on through the work of Drs. Skye Barbic and Shelly Ben-David, as well as their youth co-researchers.
In May 2019, our team received a BC SUPPORT Unit Patient Engagement Methods Cluster supported award to look at “Bridging the digital divide and opening access to online research opportunities in youth and young adults living with mental illness in British Columbia”.
Most Canadian young people are using the internet on a daily basis, and many report accessing health information online . However, not all youth may have the same access to digital information and communication technologies. The purpose of our study is to understand and dismantle the barriers to accessing digital information, research and communication technologies for marginalized youth with mental illness in BC (including LGBTQ2, racialized, and housing insecure youth) that attend a Foundry BC centre.
“The core values of Foundry are rooted in youth-centred innovation.” ‑Dr. Skye Barbic, project co-lead
Foundry BC is a network of one-stop shops for youth to access primary care, mental health care, substance use support, peer support and social services. BC also has an online service (foundrybc.ca), intended to facilitate virtual navigation, e-mental health services, and peer support. Dr. Skye Barbic, the project’s co-lead, notes that “Foundry offers a meaningful opportunity to learn from young people in BC, develop research to answer questions important to youth, and implement findings in practice. The core values of Foundry are rooted in youth-centred innovation and we are excited to complement the work happening across BC at Foundry to improve care experiences and outcomes for young people.”
This project originated from Sandra Dawson’s “Digital Health Literacy Knowledge Translation Project,” supported by the Mental Health Commission of Canada’s (MHCC) SPARK training program. Sandra Dawson, a suicide prevention activist, writer, member of CREST.BD and public advocate for people facing mental health challenges passed away October 2, 2018 after battling cancer. We are motivated both by Sandra’s vision and that of the BC SUPPORT Unit Patient Engagement Methods Cluster to advance the evidence base for effective scientific methods in patient engagement in e-health research among marginalized youth and young adults.
“I look forward to this work helping us uncover what parts of technology are inaccessible to vulnerable young people and how we can build infrastructure to remove those barriers.” ‑Alice Raimundo, youth ambassador
Alicia Raimundo, one of our youth ambassador researchers, describes that, “as someone who used the internet to find recovery and now builds online services, I find that people are often concerned about young people’s access to technology, assuming the landscape is the same as it was ten years ago. In contrast, my experience is that young people have growing access to technology every day. It might not be new or have a data plan, but they have it. I look forward to this work helping us uncover what parts of technology are inaccessible to vulnerable young people and how we can build infrastructure to remove those barriers.”
In this study, our first step will be to conduct a review of the literature of the digital divide among at-risk youth. Second, we will take what we learned from our review to conduct a qualitative study exploring barriers to accessing digital information among at-risk youth that attend Foundry centres across BC. Third, with the help of youth experts, we will conduct a Delphi consensus to create a list of ingredients that youth and young adults feel are important to young people when accessing digital information. The results of these three stages will then be used to co-create a digital literacy curriculum. In the final step, we will pilot test digital literacy curriculum at two Foundry centres in BC.
Dr. Shelly Ben-David says, “We are so lucky to bring together a strong team with expertise across different disciplines. I am excited to collaborate with our youth ambassador researchers that will be involved in every aspect of the research to co-create study objectives”. Three youth research leads will be involved throughout to guide the process of training and involving five youth peer researchers in this project from across BC. As a youth researcher, Nancy Zhao is “really excited to be part of a project that looks to explore and to better understand the social inequities that may exist among youth living with mental illness when it comes to accessing technology and digital information.”
Understanding what the barriers are to youth accessing digital information, research and communication technologies is critical, as they are an important part of the future of mental health care. We are looking forward to collaborating with our youth research partners to ensure that the curriculum that we co-create works for them. Follow along with what we learn along the way via twitter! @skye_barbic @SBenDavidPhD @nancyzhao512 @asraimun @foundrybc
Project Co leads
Assistant Professor of Occupational Science and Occupational Therapy at UBC, Foundry Lead Scientist, Centre for Health Evaluation and Outcome Sciences Scientist
Assistant Professor of Social Work at UBC Okanagan
Youth Ambassador Researchers
Our research team consists of project co-leads Drs. Skye Barbic and Shelly Ben-David; youth ambassador researchers Alicia Raimundo, Nancy Zhao, Andrea Vukobrat; research members Drs. Steve Mathias, Amy Salmon, and Julie Robilliard; and knowledge user members Pamela Liversidge, Dr. Karen Tee, Julia Hayos, Michelle Carter, Stephanie Gillingham, Andrew Tugwell, and Michelle Cianfrone.
In loving memory
Peer researcher, mental health advocate