Caregiving 'an undervalued labour of love,' says charity exec urging more support for marginalized caregivers

Researchers are recommending that more race-based data be collected about family caregivers who are Black, Indigenous and newcomers to Canada, after respondents in an online survey reported there aren't enough accessible supports for marginalized caregivers.

The survey was done in partnership with Calgary-based charity Petro-Canada CareMakers Foundation and marketing research firm Leger. Released on Sept. 9, it involved 1,610 Canadians, with 511 of them identifying as current and former family caregivers.

Many survey respondents from marginalized communities said they struggled navigating the health-care system and faced more workplace and financial challenges, along with language barriers and discrimination. 

"Many caregivers face daily struggles to get the support they need, and this survey reveals that marginalized caregivers are impacted even more," said the charity's executive director, Leila Fenc.

Sixty-eight per cent of respondents reported increased difficulties in accessing essential support services for their loved ones, and 39 per cent said they experienced discrimination from health-care professionals, compared to 22 per cent of their non-diverse counterparts. 

More than a third of caregiver respondents who don't speak English or French as their first languages said they struggled to get medical care for their loved ones, compared to 15 per cent of French speakers and 22 per cent of English speakers, the survey found. 

Twenty-four per cent said long-term financial planning or savings are significantly impacted by caregiving, compared to 13 per cent of non-diverse respondents.

"We hear stories of caregivers sacrificing their own well-being, career aspirations and financial stability to provide for their loved ones. No one should have to choose between caring for a loved one and their own wellness and future," said Fenc. 

The survey followed a discussion paper from October that was informed by three virtual roundtable discussions, involving a total of 50 people from across Canada, including researchers, professors, diverse caregivers and executive members of charity organizations.

It defined family caregivers as "someone who provides unpaid long-term or episodic assistance to a family member, friend or loved one experiencing a long-term, significant physical or mental health condition, a physical or intellectual disability or problems related to aging."

Responsibilities include personal care, mobility support and medical care management, along with providing financial aid and emotional support. The paper found that family caregivers are often overlooked in the discourse around health care.

"There's an invisibility of family caregivers, so there's this care without the caregiver aspect in Canadian organizations and health-care teams, said Reemal Shahbaz, a PhD student at the University of Toronto and the paper's author.

This can also add to mistrust of the medical system, which is felt by many members of Indigenous and Black communities, said Shahbaz, who is of Pakistani descent and is a caregiver for her two sisters, who have cerebral palsy. 

"There's a lot of inaccessibility to caregiver education and support programs that are available in cultural, linguistic or community-focused ways," she said.

"I have really seen some of the struggles that are associated with being somebody from a low-income family, being an immigrant and a visible minority, and how that affects myself and my mother as caregivers."

Intersection of race and disability

Collecting data about the joys and challenges of racialized caregivers is a good step forward, said London, Ont., filmmaker Moses Latigo Odida.

He travelled across Canada to document the experiences of Black caregivers. His eight-part mini-series, Down: Canada's Black Caregivers, was released earlier this year. 

Latigo Odida wants more culturally relevant resources for caregivers to meet their unique needs. 

"When you introduce a racial minority aspect of it, that adds another layer of barriers to access the very limited resources that are there in the first place," he said. 

"Our stories aren't told enough, so these supports aren't necessarily culturally appropriate for our experiences and needs because they're typically catered to the majority population."

The series was inspired by Latigo Odida's own experience caring for his four-year-old daughter Selah, who has Down syndrome. She was born a few months after Latigo Odida was diagnosed with clinical depression, which made his experience unique, he said. 

"There's an intersectionality of my mental illness and my Blackness," he said. "Living as a Black person on its own is an experience that invites all kinds of well-chronicled challenges, but you add to that the unique challenges of living with a disability and its more deeply felt."

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Previous research quoted in Shahbaz's paper found approximately 600,000 young Canadians aged 15 to 19 are family caregivers. Many reported having a hard time focusing on school, leading to poor grades, and leaving or delaying further education as a result.

"Caregiving is often an unseen and undervalued labour of love," said Fenc. "These findings highlight the unique barriers marginalized caregivers face and emphasize the urgent need for better support" 

Some solutions that can support racialized caregivers include ensuring more affordable health-care services, improving the accessibility of care systems, and placing marginalized family caregivers at the forefront of decision-making processes, she added. 

Shahbaz believes more research opportunities about marginalized caregivers with intersectional identity markers like race, gender, religion and sex can help fill the gaps and lead to better and culturally appropriate policies to support them. 

"This normative design of everything being decided by primary providers doesn't take into account how important culturally competent care is in the multicultural society we have in Canada," she said.