Researchers recommend that more race-based data be collected on Black, Indigenous and newcomer family caregivers in Canada, after respondents in an online survey reported there was not enough accessible support for marginalized caregivers.
The survey was conducted in partnership with Calgary-based charity Petro-Canada CareMakers Foundation and marketing research firm Leger. Released Sept. 9, the survey polled 1,610 Canadians, 511 of whom identified themselves as current or former family caregivers.
Many survey respondents from marginalized communities said they struggled to navigate the health care system and faced more challenges in the workplace and finances, along with language barriers and discrimination.
“Many carers face daily struggles to get the support they need, and this survey reveals that marginalised carers are even more impacted,” said the charity’s executive director, Leila Fenc.
Sixty-eight percent of respondents reported increased difficulty accessing critical support services for their loved ones, and 39 percent said they experienced discrimination from health care professionals, compared with 22 percent of their non-diverse peers.
More than a third of caregiver respondents who did not speak English or French as their first language said they had difficulty getting medical care for their loved ones, compared with 15 percent of French speakers and 22 percent of English speakers, the survey found.
Twenty-four percent said long-term financial planning or saving was significantly influenced by parenting, compared with 13 percent of non-diverse respondents.
“We hear stories of caregivers sacrificing their own well-being, career aspirations and financial stability to meet the needs of their loved ones. No one should have to choose between caring for their loved ones and their own well-being and future,” Fenc said.
The survey follows up on 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 charitable organizations.
The document defines a family caregiver as “a person who provides unpaid long-term or episodic assistance to a family member, friend, or loved one who has a serious long-term physical or mental health condition, physical or intellectual disability, or issues related to aging.”
Responsibilities include personal care, mobility support, and medical care management, as well as providing financial assistance and emotional support. The paper found that family caregivers are often overlooked in the discourse around health care.
“There is an invisibility of family caregivers, so there is a lack of caregiver care in Canadian organizations and health care teams,” said Reemal Shahbaz, a PhD candidate at the University of Toronto and author of the paper.
It can also add to the distrust of the medical system, which many members of the Indigenous and Black communities feel, said Shahbaz, who is of Pakistani descent and is a caregiver for her two sisters, who have cerebral palsy.
“There is a huge lack of access to educational programs and caregiver support that are available in a culturally, language- or community-focused way,” she said.
“I really saw some of the struggles that come with being someone from a low-income family, being an immigrant and a visible minority, and how that affected myself and my mother as caregivers.”
The intersection of race and disability
Collecting data on the joys and challenges of racial caregivers is a good step forward, says London, Ont.-based filmmaker Moses Latigo Odida.
She traveled across Canada to document the experiences of black caregivers. Her eight-part miniseries, Below: Black Caregivers in Canadareleased earlier this year.
Latigo Odida wants more culturally relevant resources for caregivers to meet their unique needs.
“When you introduce the racial minority aspect into it, it adds another layer of barriers to accessing the very limited resources that were already there to begin with,” he said.
“Our stories aren’t told enough, so this support isn’t necessarily culturally relevant to our experiences and needs, as it’s typically aimed at the majority population.”
The series was inspired by Latigo Odida’s own experience of parenting her 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 her experience unique, she said.
“There is a connection between my mental illness and my blackness,” he said. “Living as a black person is an experience that invites a variety of well-documented challenges, but you add the unique challenges of living with a disability and it becomes even more profound.”
Recommended interventions
Previous research cited in Shahbaz’s paper found that about 600,000 Canadian youth aged 15 to 19 are family caregivers. Many report difficulty focusing in school, resulting in poor grades, and consequently dropping out or delaying further education.
“Caregiving is often an invisible and unappreciated labor of love,” Fenc said. “These findings highlight the unique barriers that marginalized caregivers face and underscore the urgent need for better support.”
Some solutions that can support racially diverse caregivers include ensuring more affordable health care services, increasing the accessibility of care systems, and putting marginalized family caregivers at the forefront of decision-making processes, she added.
Shahbaz believes more research opportunities on marginalized caregivers with intersectional identity markers such as race, gender, religion, and sex could help fill the gap and lead to better, culturally appropriate policies to support them.
“The normative design that says everything is decided by the primary provider doesn’t take into account how important culturally competent care is in the multicultural society that we have in Canada,” she said.
