Abstract
Background. Young carers, or those under the age of 25 who provide caregiving support to a family member/loved one, are a unique and underrepresented demographic of caregivers. Young carers interact with healthcare systems at various touchpoints, and healthcare providers (HCPs) may be unequipped to engage with them and support their needs. Our presentation will share the final output of an innovative series of co-design workshops, whereby a toolkit for HCPs was built with young carers, community caregiving organizations and HCPs from across Canada. The learnings from this project will help to inform collaborations between people with lived experience, researchers, HCPs and community organizations.
Approach. Through an integrated knowledge translation approach, we mobilized the findings from a national survey of HCPs using a collaborative and cumulative design process. The foundational survey was adapted from a Swiss survey and focused on assessing the awareness of HCPs and their recognition of the care support that youth provide. The survey also assessed ability of HCPS to refer young carers to appropriate resources. Survey findings were shared and validated with HCPs and YCs following a co-design approach. An initial co-design workshop provided the essential context of the level of awareness of young carers of HCPS based on the health system they practice within. Workshops incorporated prioritization exercises, encouraging participants to collaboratively identify the key challenges young carers face as they interact with various facets of healthcare. The workshop series culminated in the co-production of a toolkit for HCPs, embedding survey findings and evidence to support HCP engagement. Key knowledge users were embedded in this project's design, conduct and dissemination. The project is co-led by an individual with lived experience as a young carer, and engages with an advisory group of young carers from across the country. Canadian caregiving organizations and a team of researchers, both national and international, also advised on this work. The co-design workshops included young carers, representatives from community organizations and HCPs.
Results. Targeted toward HCPs, this toolkit is informed by young carers; experiences as they navigate the healthcare system and includes curated resources that HCPs can connect young carers to. The toolkit addresses the unique challenges young carers may face in navigating care responsibilities (i.e., interpretation across a language difference, advocating for the care recipient) while undergoing a significant time for personal growth and development (i.e. education, employment, life transitions). In addition to co-designing the content of the toolkit, the workshops also served to learn from HCPs about how the toolkit could be feasibly and sustainability integrated into their clinical practice.
Implications. Supporting HCPs in recognizing the contributions of young carers will help improve the support for this hidden population and strengthen their integration as care partners within healthcare systems. Co-design as a knowledge mobilization tool has important implications for meaningful partnerships with end users and communities. Partnerships with caregiving organizations across Canada were a critical foundation for this project and enabled us to build on existing resources (i.e., identification checklists, educational tools) throughout the co-design process in order to tailor them to the young carer population. This presentation will present key learnings for partnering with HCPs and community organizations, and how research and co-design can mutually benefit both service providers and users. The next steps are to mobilize and spread our toolkit to HCPs nationwide to increase the recognition and support of young carers in healthcare. Partnerships and collaboration play a key role in improving the engagement of young carers in healthcare, moving towards the ultimate goal of improving the health and well-being of young people and the individual(s) they care for.