Caring is ‘an undervalued labour of love’, says charity calling for more support for marginalised carers

Researchers are recommending more data be collected on caregivers who are Black, Indigenous and newcomers to Canada after respondents to an online survey said there is not enough accessible support for marginalized caregivers.

The research was conducted in partnership with Calgary-based charity Petro-Canada CareMakers Foundation and market research firm Leger. It was released on September 9 and included 1,610 Canadians, 511 of whom identified as current and former caregivers.

Many respondents from marginalized communities reported struggling with health care, increased employment and financial challenges, language barriers, and discrimination.

“Many caregivers struggle to get the support they need on a daily basis, and this research shows that marginalized caregivers are hit even harder by this,” said Leila Fenc, the charity’s chief executive.

68 percent of respondents said they had more difficulty accessing essential support services for their loved ones. 39 percent said they experienced discrimination from healthcare professionals, compared to 22 percent of their non-diverse counterparts.

The study found that more than a third of caregivers who did not speak English or French as their native language had difficulty obtaining medical care for their loved ones. For French speakers, this figure was 15 percent and for English speakers, 22 percent.

Twenty-four percent said long-term financial planning or saving is significantly impacted by caregiving, compared to 13 percent of non-diverse respondents.

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

The investigation followed a discussion paper in October, which was fueled by three virtual roundtable discussions involving a total of 50 people from across Canada, including researchers, professors, various caregivers and charitable leaders.

This defined an informal caregiver as ‘someone who provides unpaid, long-term or occasional assistance to a family member, friend or loved one who is experiencing a long-term, serious physical or mental health condition, a physical or intellectual disability or problems associated with aging’.

Responsibilities include personal care, mobility support, and medical care management, along with providing financial assistance and emotional support. The article concluded that informal caregivers are often overlooked in the discourse surrounding health care.

“Community care is invisible, so there is care without a caregiving aspect in Canadian organizations and care teams,” said Reemal Shahbaz, a PhD candidate at the University of Toronto and author of the paper.

This can also lead to distrust in 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 significant lack of caregiver education and support programs that are available in culturally, linguistically or community-based settings,” she said.

“I really saw the challenges that come with being from a low-income family, being an immigrant, and being a visible minority, and how that affects me and my mother as caregivers.”

Intersection of Race and Disability

According to London, Ontario-based filmmaker Moses Latigo Odida, collecting data on the joys and challenges of caregivers of color is a positive step forward.

He traveled across Canada documenting the experiences of black caregivers. His eight-part miniseries, Down: Black Caregivers in Canadawas released earlier this year.

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

“When you add a racial minority aspect to it, it creates even more barriers to accessing the very limited resources that are already there,” he said.

“Our stories aren’t being told enough, so these forms of support aren’t necessarily culturally appropriate to our experiences and needs because they’re typically focused on the majority population.”

The series was inspired by Latigo Odida’s own experience caring for his 4-year-old daughter Selah, who has Down syndrome. She was born a few months after Latigo Odida was diagnosed with clinical depression, making his experience unique, he said.

“There’s an intersectionality between my mental illness and my Blackness,” he said. “Living as a Black person in itself is an experience that comes with all sorts of well-chronicled challenges, but when you add to that the unique challenges of living with a disability, it feels more profound.”

Recommended interventions

Previous research cited in Shahbaz’s paper found that approximately 600,000 young Canadians aged 15 to 19 are caregivers. Many reported having difficulty concentrating in school, leading to poor grades and dropping out or delaying further education.

“Caregiving is often an invisible and undervalued labor of love,” Fenc said. “These findings highlight the unique barriers marginalized caregivers face and underscore the urgent need for better support.”

Some solutions that can support caregivers of color include ensuring affordable health care, improving accessibility to health care systems and putting marginalized family members who are caregivers at the forefront, she added.

Shahbaz believes that more research opportunities on marginalized caregivers with intersectional identity characteristics such as race, gender, religion, and sex can help fill the gaps and lead to better and culturally appropriate policies to support them.

“This normative design, where everything is decided by primary care providers, fails to take into account the importance of culturally competent care in Canada’s multicultural society,” she said.