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COVID-19 and Caregivers of Assisted living Residents: their Experiences and Support needs (COVCARES-AB/BC)

Project statusOngoing
Contact Matthias Hoben
Institution web pagehttps://apps.ualberta.ca/directory/person/mhoben
Host institution University of Alberta
Team members Matthias Hoben, University of Alberta Colleen Maxwell, University of Waterloo Jennifer Baumbusch, University of British Columbia David Hogan, University of Calgary Kim McGrail, University of British Columbia Andrea Gruneir, University of Alberta Natasha Lane, University of British Columbia Joseph Amuah, University of Ottawa Stephanie Chamberlain, University of Alberta Lauren Griffith, McMaster University Corinne Schalm, Government of Alberta, Continuing Care Branch Heather Cook, Ministry of Health, British Columbia Hude Quan, University of Alberta Sheryl Zimmerman, University of North Carolina (Chapel Hill)
Funding information (if funded) This project is funded by Alberta Innovates: https://albertainnovates.ca/impact/newsroom/helping-the-helpers-impacts-of-covid-19-on-assisted-living-residents-family-friends/
Project Summary

RATIONALE
COVID-19 has had a devastating impact on the quality of care and lives of vulnerable older adults across Canada. Persons of advanced age with complex chronic conditions and frailty have high rates of infection (and atypical presentation), and if infected, increased risks for severe illness and serious health outcomes. In Canada, up to 85% of COVID-19 deaths have occurred among frail older adults in congregate care settings. While most media and research attention has focused on residents of long-term care (LTC) homes, far less attention has been paid to other common continuing care settings such as assisted living (AL). This is a significant omission given the rapid growth in AL across Canada (particularly within British Columbia [BC] and Alberta [AB]) and the fact that AL residents exhibit similar vulnerabilities to those in LTC and reside in care settings similarly affected by insufficient staffing, oversight and resources for infection prevention and control. Importantly, relative to LTC, AL facilities offer fewer services and have lower staffing levels (including fewer skilled staff members per resident). Consequently, there is an expectation for significant family involvement in AL resident care.

Family caregivers are essential to ensuring older AL residents receive timely and appropriate care. Variation in the type and amount of health and social care they engage in is closely linked with the health and social status of residents and with their own health and well-being. Though the immediate and longer-term effects of COVID-19 (and related workforce shortages, physical distancing and social isolation) on AL residents and their families are expected to be extensive and long-lasting, they remain to be investigated in Canada.

AIM & OBJECTIVES
Our overall aim is to illuminate and understand the impact of COVID-19 (and associated social distancing restrictions and policies) on the care and oversight provided by family caregivers within a diverse array of AL facilities, and the resulting consequences for the health and psychosocial well-being of these essential (though often invisible) care providers. Our prospective observational study will include 1,000 family caregivers randomly sampled from (publicly subsidized) AL facilities across AB and BC. Extensive primary data collection strategies (family caregiver & facility telephone surveys) will be complemented with linkages to health administrative data. We will employ descriptive statistics and hierarchical mixed models to examine:

  1. The effects of COVID-19 and related facility restrictions on the types/amount of health and social care provided to residents by key family caregivers. [Impact on essential care]
  2. The impact of COVID-19 overall, and of associated changes in care activities and engagement by family caregivers, on the general health, health behaviours and psychosocial well-being of these caregivers. [Impact on caregiver]
  3. The nature and timing of COVID-19 related facility infection prevention and control policies, practices, and communication strategies (with family caregivers) as reported by key facility informants vs. family caregivers. [COVID-19 Preparedness]

We will further explore variation in the above estimates and associations by select family caregiver (e.g., age, gender, socioeconomic status), resident (e.g., age, sex, functional status) and facility characteristics (e.g., size, region, for-profit status, COVID-19 testing/outbreak status, visiting policies).

IMPACT
Our research addresses a significant knowledge gap regarding a growing (albeit neglected) care setting expected to be significantly affected by COVID-19. Our findings will directly inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL during emergencies; and, (ii) permit rapid and enhanced emergency preparedness, staffing and services in AL. Interventions targeting both are essential for mitigating the adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Outputs / Expected Outputs

Our stakeholder partners (provincial & regional healthcare decision makers and family caregiver advocates) worked closely with the research team to
develop the project and will continue to do so throughout (to provide input on key priorities and analyses, assist with interpretation of findings and contextual framing of research deliverables (integrated knowledge translation). We will develop targeted end-of-grant dissemination strategies for different audiences. For stakeholder partners, we will work collaboratively to produce summary reports tailored to the needs of provincial/regional decision makers, family caregivers and resident councils, and facility administrators/staff. This will include a series of high-level reports and presentations to permit
discussion of policy and practice implications and strategies for improvement (via end-of-grant summits in AB and BC), lay presentations and reports for caregivers/residents, and project specific infographics, webinars and social media to engage the broader public. For academic audiences, our findings will be disseminated via peer-reviewed publications (e.g., CMAJ, Medical Care, JAMDA) and conference presentations (e.g., Canadian Geriatrics/Gerontology meetings, International LTC Policy Network).

Our research will contribute knowledge that will not only help mitigate the spread of COVID-19 but to also minimize impacts on vulnerable persons. It will help to protect the rights, dignity and care of a vulnerable population uniquely affected but currently neglected in COVID-19 related priorities for resources, staffing and services. The variability in COVID-19 preparedness, outbreak management, and adverse outcomes observed across AL and LTC settings illustrates the potential for evidence-informed best care policies, practices and interventions. With our collaborators and established AL research platform, our work will accelerate the availability of robust, real-time evidence to inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL; and, (ii) permit rapid and enhanced preparedness, staffing and services in AL. Both are key to mitigating adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Project website https://sites.google.com/ualberta.ca/covcaresab-bc/home

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COVID-19 and Caregivers of Assisted living Residents: their Experiences and Support needs (COVCARES-AB/BC)