Family caregivers are the backbone of the healthcare system. Over time, caregiving takes a tremendous toll on the caregiver. This is particularly true for caregivers who (1) provide >21 h of care/week, and/or (2) support those experiencing depression, cognitive decline, aggressive behaviours, and life-limiting conditions requiring complex care. Many caregivers face deteriorating physical and mental health, social isolation, family conflict, and job loss. Caregivers often have little energy or time to access resources and their experiences with the healthcare system, healthcare professionals and service agencies can either buoy them through challenging times, or contribute further to their distress. This project aimed to hear the voices of family caregivers; their challenges, struggles, joys, and motivation for persevering through hardship, as well as their recommendations regarding education, resources, and supports that might enhance their resilience. This community engagement research project utilized an ethnographic, qualitative approach involving three, 2-h focus groups that were analyzed using thematic analysis. Caregivers identified barriers to resilience, including demands on their time, changing roles and responsibilities, challenges of learning about medical conditions, their own emotional responses, financial strains, changing family dynamics, and personal health. Caregivers also identified several facilitators to resilience, including motivations for caregiving, sense of purpose and validation, spirituality, emotional experiences, and coping strategies. Caregivers recommended that educational opportunities, including increasing health care providers education concerning dementias, increased access to resources, system navigators, financial supports, political advocacy, and a more responsive caregiver centered system would support family caregiving.

Background: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. Objective: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. Methods: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers’ learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). Results: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = − 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners’ knowledge and confidence. Conclusion: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Even before the COVID-19 pandemic, earlier acute care patient discharges, restricted admissions to long-term care, and reduced home care services increased the amount and complexity of family caregivers’ care work. However, much less is known about rural caregivers’ experiences. Thus, our aim in this sequential mixed-methods study was to understand how COVID-19 affected rural family caregivers. Thematically analyzed interviews and linear regression on survey data were used to understand family caregiver stress. Fourteen rural caregivers participated in interviews. They acknowledged that they benefitted from the circle of support in rural communities; however, they all reported having to cope with fewer healthcare and social services. 126 rural caregivers participated in the online survey. About a third (31%) of these caregivers had moderate frailty, indicating that they could benefit from support to improve their health. In linear regression, frailty, social loneliness, financial hardship, and younger age were associated with caregiver anxiety. Contrary to the qualitative reports that people in rural communities are supportive, over two-thirds of the rural caregivers completing the survey were socially lonely. Rural family caregivers are vulnerable to anxiety and social loneliness due to the nature of caregiving and the lack of healthcare and social service supports in rural areas. Primary healthcare and home care teams are well-positioned to assess caregivers’ health and care situation as well as to signpost them to needed supports that are available in their areas.

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne’s interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

We surveyed 604 family caregivers residing in the province of Alberta to better understand the impact of the COVID-19 pandemic on anxiety, loneliness, and care work. We assessed anxiety with the Six-Item State Anxiety Scale and loneliness with the DeJong-Gierveld Loneliness Scale. The COVID-19 pandemic created two contexts giving rise to feelings of solitude for family caregivers. Family caregivers of Albertans living in private community homes were overwhelmed with caregiving needs while those caring for Albertans living in congregate settings were restricted from caregiving. The results indicated that before the COVID-19 pandemic, 31.7% of family caregivers were anxious and 53.5% were lonely. The proportions of those who were anxious rose to 78.8% and lonely to 85.9% during the pandemic. The qualitative responses of family caregivers connected being overwhelmed with care work either in community homes or as the designated essential caregiver in congregate living settings, as well as being unable to care in congregate care settings, with anxiety and loneliness. The caregivers reporting improvements in their health and relationships with care-receivers credited spending time with the receiver doing pleasant activities together, rather than purely performing onerous care tasks. Policymakers need to consider organizing health and community services to ensure family caregivers are not overwhelmed with care tasks or excluded from caring in congregate care.