Co-creating and implementing resources to improve family caregiver experiences in geriatric services

• Published in: International journal of integrated care Vol. 19; no. 4; p. 559
• Main Authors: Elliott, Jacobi, Butler, Roy, Perkin, Karen, Mahood, Michelle, McCarthy, Elizabeth
• Format: Journal Article
• Language: English
• Published: Ubiquity Press 08.08.2019
• Subjects: co-creation; family caregiver; geriatrics; implementation
• ISSN: 1568-4156; 1568-4156
• DOI: 10.5334/ijic.s3559

Background: Engagement of patients and family caregivers in decision-making and healthcare planning has been recognized as an important aspect of improving care. An estimated 8 million people in Canada are family caregivers and save the healthcare system over $31 billion annually, yet, they are often referred to as “silent partners” in care.  For every one hour of professional health care received, family caregivers provide seven hours of care. Improving experiences of family caregivers is essential for our healthcare system. St. Joseph’s Health Care London (St. Joseph’s), a multi-site health care organization in Ontario, Canada, in partnership with The Change Foundation, aims to improve family caregiver experiences for those caring for older adults. Method: An innovative experience-based co-design approach was used, grounded in an implementation science framework (Point of Care UK, 2016). Staff (n=133), physicians (n=7), patients and family caregivers (n=90) worked together to identify three priority areas through interviews and surveys: i) caregiver involvement; ii) transitions of care; and iii) family caregiver education. Staff and family caregivers co-created four innovations to improve the experiences related to the above priorities. Work was evaluated using appropriate techniques. Results: Four innovations have been implemented in inpatient and outpatient geriatric clinics. Family caregivers and staff developed, i)a team roles list that includes the provider name, role description and contact information; ii) a formal education process to ensure family caregivers receive training and education to support the patient; iii) a discharge checklist to ensure that patients and family caregivers are prepared for discharge and know what will happen next in their journey, and iv) a care binder which is an individualized, portable resource and record of the patient’s journey given at admission and updated throughout the stay. Caregivers and patients have reported good experiences with the newly developed resources. Healthcare providers have reported that they are being more intentional about engaging family caregivers in the care planning processes. Implementation lessons learned throughout the project including, involving frontline providers from the beginning, having clear process change directions, and ensuring providers understand why it is important to engage with family caregivers. Discussions/Conclusions: Co-developed resources and care processes were implemented and evaluated in geriatric care settings. Family caregivers and healthcare providers worked together throughout all stages of this work, including implementation and evaluation. This work has increased the overall awareness and education of the importance in supporting family caregivers. Lessons Learned: Lessons learned include: a) Leadership and establishing caregiver engagement as a corporate priority was important for buy-in; b) Development of internal guidelines to support caregiver involvement was needed; c) Understanding accountability for implementation of change ideas between staff, patients and caregivers Limitations: This work was completed in one program at a large organization; however tools can be generalizable to other settings. Funding allowed for dedicated staff and resources to carry out this work. Future Research: Future research should focus on wider spread of resources within and outside of the organization, to improve integration of care across multiple programs and sectors.