Co-designing person-centred self-management resources for home and community care settings

Abstract

Introduction: An increasing number of Canada's home care population live with medically complex health conditions and rely on the support of informal (unpaid) caregivers to remain in the home. Without access to effective chronic disease management support, home care clients and caregivers are poorly equipped with the knowledge, skills, and confidence to effectively manage symptoms in their daily lives, contributing to avoidable emergency department visits and caregiver burnout. YourCare+ is an online education platform developed to improve system navigation, promote caregiver wellness, and offer resources to enhance knowledge and skills to manage chronic disease symptoms in home and community environments. Aims, Objectives, Theory or Methods: The objective of this project is to develop, test, and deploy product knowledge materials for home care clients and caregivers. Desired outcomes include decreased caregiver distress, increased capacity and confidence for self-management of chronic disease, and reduced avoidable emergency department visits triggered by unstable chronic disease. We leverage knowledge and insight from persons with lived and worked experience (home care clients, informal caregivers, home care providers), knowledge experts (clinical researchers, physicians), and accessible design experts to inform and co-create practical care solutions. Educational materials were adapted from a cardiorespiratory model of care tested in the DIVERTCARE trial and modified for broader use by home care clients and informal caregivers. Highlights or Results or Key Findings: YourCare+ was created with embedded engagement opportunities at every step of development. Engaging persons with lived and worked experience was essential to creating person-centred resources and ensuring successful uptake. Home care providers were vital to helping identify the needs and learning preferences of vulnerable care clients and caregivers who are often inaccessible and under-represented in advisory groups due to care load and time constraints. New content was introduced to address common home care stressors, such as system navigation and understanding the roles of service providers. Topics were sequenced intentionally to optimize knowledge retention and confidence when engaging with skillbased CDM content. To date, YourCare+ offers over ten free tools and self-assessments supporting home care navigation, caregiver wellness, symptom management, and communication with healthcare professionals. The website has reached over 24,496 people, with a total of over 1200 tool downloads. YourCare+ resources disseminate through integrated care pilot projects, targeted social media campaigns, and digital health applications. Monthly care client and caregiver advisory sessions, website analytics, and user feedback surveys inform ongoing iterative design. Conclusions: Accessible person-centred education, tools, and resources support home care clients with chronic diseases to remain in the home. YourCare+ reimagines home-based self-management through the creation and delivery of virtual resources that will improve self-management skills and build capacity to optimize continuity of care. Implications for applicability/transferability, sustainability, and limitations: Dissemination strategies can be adapted to meet the needs of different care client and caregiver populations. Web-based resources are inaccessible for some care clients and caregivers. Digital and analog access to resources should be offered when possible to accommodate user preferences. [ABSTRACT FROM AUTHOR]