Abstract
Family caregivers are the largest care workforce. Besides providing 90% of the care, they are conduits of critical information about the patient and the de facto care coordinators in siloed health and social care systems. It is well established that family caregivers require support to reduce stress, anxiety, and burden caused by caregiving demands and that health providers should consistently recognize and include family caregivers as partners on the healthcare team. However, few healthcare professionals receive caregiver engagement training or person-centered care for family caregivers. Often, they don't engage caregivers due to lack of confidence, uncertainty about how to assist, or limited time in patient care settings.This gap highlights a critical area for improvement and learning in integrated care.
With a co-design process, we developed and evaluated, and released Competency-based Foundational and Advanced Caregiver Centered Education for the Health Workforce to Engage and Support Family Caregivers. Critical research approaches like co-design are recommended to improve and optimize healthcare users' experience and prepare health providers to effectively learn from and collaborate with people with lived experience. We expected the co-design process and educating health and social care providers to be critical steps to shifting the culture to including family caregivers as partners in care.
From November 2019 to December 2023, three levels of education, foundational, advanced, and champions were co-designed by multilevel, interdisciplinary stakeholders including family caregivers and evaluated at three levels of the Kirkpatrick Barr Healthcare Education Evaluation Framework (Level 1 Satisfaction with education delivery; Level 2 Changes knowledge, skills, and attitudes, pre and post education; Level 3 Behavior and Practice Changes) available free online. Over 6000 providers have taken the Foundational education (online November 2020), 450 the Advanced Education (May 2023) and 60 the Champions modules (October 2023). T-tests of the Foundational and Advanced education show significant improvements in participants' ratings of their knowledge and skills to work with family caregivers despite participants' high pre-test ratings. Qualitatively, participants indicated they were more responsive to caregivers and more likely to ask caregivers about their needs. The next step is to measure impacts of our Caregiver-Centered Care education on caregivers' perceptions of providers' communication, assessment of their needs, and navigation assistance. This novel education is a step towards changing the culture and context of healthcare to recognizing family caregiver's role as a partner on the care team and truly valuing the work they are doing for their care recipient, health and social care systems, and society. The co-design process created space for educational designers, educators, researchers, health and social care providers and leaders to work with and learn from family caregivers. Family caregivers emphasized they felt they had a valued role in the co-design process. Worldwide family caregivers have been invisible in the health care system. The shortage of healthcare providers, increasing need for care, and people’s desire to age-in-place make ways to recognize and support caregivers particularly crucial now.