Ryerson University, Young Caregivers Association (YCA), Brock University, and Ontario Tech University partnered to explore how we can best support young caregivers. The study is funded by the Social Sciences and Humanities Research Council.
Young caregivers are children under the age of 25 who provide unpaid care to a loved one, often a grandparent[s], but it can also be a sibling, parent, or friend who lives with chronic injury, illness, or disability. Young caregivers spend 14–27 hours every week caring for others. This unpaid work saves each family and the healthcare system from $25,000 to $50,000 every year. Young caregivers are often invisible and remain largely unmentioned in healthcare policies and government legislation even though YCA estimates there are over a million young caregivers across Canada.
Young caregivers may be providing care to one, or more, loved ones for a variety of reasons. These could be related to mental and/or physical health issues, or related to aging. Knowing that young carers were juggling school and/or jobs alongside their caregiving responsibilities, while also dealing with pandemic safety realities, we felt we needed to produce resources that spoke to their needs at this time. Even before COVID-19, we could see that without proper support, young caregivers were vulnerable to short and long-term setbacks in their academic, personal, social, and professional development.
YouTube is one of the biggest platforms for video sharing, so it makes sense that young carers wanted an engaging and accessible video to connect them to the information and resources they need. As part of the partnership, an animated YouTube video was developed to address the new challenges young caregivers face. The launch was timed with the beginning of the new school year to provide an access point of support. It also offered information for other emergency planning needs that families with young carers may have, like having supplies or a plan of what to do if a family member is suddenly injured.
The project team are currently working on their study consisting of three phases. They began with focus groups with young caregivers between the ages of 12 and 25 during Phase 1 of the study. The focus groups identified the needs of young carers in rural communities and how these young caregivers’ needs differed from their urban counterparts. The study started pre-COVID-19 and didn’t originally start out to address emergency planning needs, but the team quickly adapted to align with the needs of the young carers during the pandemic. Without the Young Caregivers Association actively communicating what they were learning from the young caregivers they served, the team would not have been able to respond as quickly as we did. The second phase of the study is going to assess the emergency planning video’s impact on young caregivers and look at ongoing challenges with using YouTube as a knowledge sharing platform. Phase 3 is ongoing as well and will give a more detailed exploration of the needs and experiences of young caregivers and their families during COVID-19. The team is hoping to gain some insight into how young caregivers are adapting to school and distance education as well as the impact of new programs like the Canada Recovery Caregiving Benefit.
Phase 1 revealed that, compared to those living in urban communities, young carers in rural areas said Wi-Fi and data was expensive and Google was mainly used for entertainment/distraction, but both groups found online videos to have some value. Participants from rural communities preferred to find and receive information, when it comes to caregiving, through in-person connections, although they still appreciated the usefulness of how-to videos online. Phase 1 of the study also found that young caregivers from both rural and urban communities had privacy concerns with online resources, but trusted YouTube channels with a lot of subscribers. Young caregivers from both rural and urban communities were cautious when using social media platforms like Facebook, Instagram, and Snapchat. Both groups of young caregivers largely chose to use the messaging feature only on these platforms to chat with people they already knew in real life, and not for finding information. They often avoided using other features of social media platforms because of seeing “too much negativity” in posts and comments.
What we have learned from this study is that we need policies and guidelines to include and provide consideration specifically for young carers. Young carers, and those they care for, need reputable resources and services that are communicated to them specifically. They need help to filter information and know what is credible and what is not. YouTube seems to be a viable option for information dissemination. Social media on the other hand, although commonly used, may not be as effective as an avenue for information sharing because young carers only use those platforms for messaging their friends and family members.
The video developed as an outcome of this study, as well as the emergency planning and preparedness resources, can be found here:
Dr. Kristine Newman (Principal Investigator), Associate Professor, Ryerson University
Dr. Heather Chalmers (Co-Investigator), Associate Professor, Brock University
Dr. Vivian Stamatopoulos (Co-Investigator), Associate Teaching Professor, Ontario Tech University
Michelle Lewis, Director, Young Caregivers Association (formerly Powerhouse Project)
This study was funded by the Social Sciences and Humanities Research Council.