Moving into a long-term care home, where nobody speaks your mother tongue or understands your culture, is an uncomfortable reality faced by many Canadians in their later years. As people age, they often revert to their mother tongue and communication with others outside their language group becomes difficult, particularly for those suffering from dementia. For many, it hardly feels like home.
The Chief Public Health Officer of Canada has called for an equity approach in Canada’s pandemic recovery plans: an approach that is evidence-based, develops new innovations, spurs action to decrease the impact of the social determinants of health, as well as to improve data, governance and communication. We shouldn’t stop there.
As Canada is set to establish its first national standards for long-term care, incorporating evidence and understanding the reasons for disparities experienced by people from diverse ethno-cultural backgrounds who live and work in LTC can help to build a better system for all Canadians. Canada’s governments must ensure that the development and implementation of national standards for LTC is guided by an equity and diversity lens.
Inequities in long-term care
Before the COVID-19 pandemic, significant inequities were found among people needing and providing LTC. A Wellesley Institute study highlighted that immigrant seniors, especially racialized immigrants and those with a non-English mother tongue, experienced cultural and language barriers to access quality LTC in the Greater Toronto Area. An Ontario-wide study found that being an immigrant and applying to an ethno-specific home was associated with significantly longer wait times. Family caregivers reported substantial health impacts from having to overextend themselves in balancing work, family and the care needs in supporting seniors who face delayed, or lack of, access to care. A Canada-wide study found that immigrant family caregivers were three times more likely than non-immigrants to report a health consequence from informal caregiving.
The fundamental principle of the Long-Term Care Homes Act of 2007 in Ontario requires all homes to be operated so residents “have their physical, psychological, social, spiritual and cultural needs adequately met.” Yet, the Ontario LTC COVID-19 Commission – an independent commission established by the provincial government to investigate the spread of COVID-19 and to provide recommendations on future actions – heard that LTC homes did not always recognize, acknowledge or value residents’ diverse needs. This caused some residents from diverse ethno-cultural groups to feel isolated and alienated, which was exacerbated during the COVID-19 pandemic when they were cut off from families who provided essential supports to address cultural and language barriers to receive quality care in LTC homes.
Further, a recent analysis of 2016 census data highlighted the breadth of inequities experienced by LTC workers. Those working in LTC were disproportionately Black and Filipina women who were more likely to be employed part-time than women who work in non-care fields. Women LTC workers made $1,684 less annually than women workers in comparable fields. They also had higher rates of self-assessed “poor” physical health than non-care workers. During the pandemic, particularly in the first wave, work in LTC became more precarious and even dangerous. LTC workers faced greater risks of COVID-19 infections and deaths as many were working in multiple homes to make ends meet, with no proper personal protective equipment. In addition to the personal and societal costs of bad jobs, in health care they contribute to poor quality of care and health outcomes. COVID-19 data analysis by the Canadian Institute for Health Information suggested that LTC homes with critical shortages of personal support workers and a higher rate of use of agency workers experienced more severe COVID-19 outbreaks among residents.
Diversity in LTC reform
The sector must be transformed. For institution-based LTC, there has been growing attention on decades-old advocacy around transitioning LTC into more home-like environments, whether by building more smaller, household-type facilities or making smaller spaces within large institutions. Both our current facilities and proposals for new home-like environments must reflect the growing diversity in the aging population across Canada and especially in urban centres such as Toronto, Vancouver, and Montreal.
When Wellesley Institute asked family caregivers of immigrant seniors, across diverse ethno-cultural communities, about key factors considered when seeking LTC, they highlighted their quest to find the LTC homes where their family members would “feel at home.” Many family caregivers described such home-like environments as places where their loved one could speak their first language with other residents and staff, enjoy familiar meals, games and songs just as they once did at home. They wanted a place where their loved one’s diverse needs were respected and included in care planning and delivery. Evidence from international research suggests that meeting individuals’ cultural and linguistic needs is especially important for the health of people living with dementia in care homes.
In the coming months, Canada’s Health Standards Organization (HSO) will develop a national LTC services standard with a focus that reflects current discussions about LTC reform, such as resident- and-family-centred care that values the importance of respect, dignity, trust, and quality of life with a healthy and competent workforce.
National standards for LTC that include diversity and equity
Building on the promising strategies developed by Canadian and international jurisdictions, there are three key priorities that require immediate, concrete actions to ensure that equity and diversity is embedded in all initiatives leading up to transforming LTC.
First, in developing the new national standard, targeted efforts should be made to meaningfully engage with diverse ethno-cultural communities through public and expert consultations to better understand and address the issues these communities face in receiving and providing quality LTC. In particular, efforts should be made to learn about any existing barriers to meet the expectations set by the current standard (e.g., access to translation and interpretation services). This could be done by, for example, asking diverse groups of LTC residents, families and staff to share their experiences in accessing supports. Building on the current evidence on health inequities, the diverse perspectives gathered in this process should inform the new standard development.
Second, the standard should present clear guidelines for LTC homes to provide a good job to everyone working in each home, with decent pay and working conditions that enable workers to achieve a healthy, thriving life. Amidst COVID-19, some Canadian jurisdictions rightly took steps to improve pay and employment conditions for those working in LTC. For example, in April 2020, the B.C. government implemented a policy making all LTC staff provincial employees – employed full-time at one facility, with pay comparable to workers in public-sector unionized positions. These changes, if made permanent, could be effective in improving the quality of care and the health of all Canadians living and working in LTC.
Third, the standard should set specific goals and outcome measures for health equity. Clear guidance should be presented on how to track and report on the progress on improving health equity for people living and working in LTC. Currently, a lack of data on resident and staff socio-demographic information – such as immigration status, race and ethnicity – limits our understanding of health-equity impacts of the pandemic on people living and working in LTC. Canada has lagged behind other countries in the collection of such data in health care. Enhanced collection and use of socio-demographic data can be a powerful tool in identifying existing gaps and the effectiveness of any interventions in addressing such gaps for diverse population groups.
New national standards for LTC present a promising opportunity to establish pan-Canadian standards that promote equitable access to high-quality care. With strong commitments to equity by all levels of government, we can ensure that the long-term care reform improves the health and well-being of all Canadians.
This article is part of the Kick-starting Reform in Long-Term Care special feature.