Researcher looks at how adult caregivers support each other in care for aging relatives

Researcher Marina Bastawrous says in her own Egyptian culture, she sees the toll that caregiving takes on her Aunt Samia, primary caregiver for Marina's aging grandmother. From left to right: Bastawrous's aunt Samia Bissada, researcher Marina Bastawrous, and Bastawrous's grandmother, Asisa Rizk.

A doctoral researcher in Toronto is hoping to increase understanding and enhance healthcare guidelines when it comes to the role of adult caregivers in Canada -- and how they support each other.

In particular, Marina Bastawrous wants to find out if adult caregivers could do more to support one another since they are working in an aspect of healthcare where their role is seldom acknowledged.

Although many researchers have explored the relationships between caregivers and their aging parents, almost no one has looked at the one-on-one relationships between caregivers.

As a PhD candidate at the University of Toronto’s Graduate Department of Rehabilitation Science, Bastawrous has always been interested in the relationships between adult children and their aging parents.

According to Statistics Canada, 62 per cent of caregivers 45 years of age or older - about one in five adult Canadians - are caring for a parent.  

One-on-one relationship not examined

Bastawrous says although many researchers have explored the relationships between caregivers and their aging parents, almost no one has looked at the one-on-one relationships between caregivers.

Bastawrous herself hadn’t given it much thought until she began hearing from women whom she interviewed for her Master’s thesis that they wished they had someone to talk to about their experiences.

“The comment came up often enough to interest me,” said Bastawrous, who had also done a literature review of 42 studies looking at the wellbeing of adult children caregivers.

The review, which will be published this year in the journal, Health and Social Care in the Community, showed that sons are more methodical in their approach to caring for their parents than daughters, who are more likely to provide emotional support as well as physical care.  

Bastawrous says in her interviews, women also told her they were more likely to give up their jobs in order to care for an ailing parent, increasing their financial strain as well.  

Her review of the research literature around adult caregivers showed that the added emotional burden meant that daughters also tended to become more depressed and isolated than sons who were caring for their parents.

Marina says she sees signs of that with her own aunt who has diabetes and is also caring for her elderly mother.

'I see the toll on her'

“She doesn’t even think of herself as a caregiver,” says Bastawrous.  “But I see the toll on her.  She’s holding vigil, she doesn’t go out as much and when I suggest she could get support, she says, ‘It’s okay, I’m doing it myself.'"

Bastawrous says learning more about the bond between caregivers could suggest a new approach to supporting people like her aunt.

Bastawrous says the support could take the form of “appraisals” in which one caregiver can ask another caregiver to help assess a situation as well as providing direction or suggesting different strategies.

“You could even go so far as to say caregivers are in a unique position,” says Bastawrous, “to provide that evaluation because they’ve been through that experience.”

Bastawrous hopes her research will suggest new policy directions and best practise guidelines for Canada’s healthcare system, which has become heavily dependent on adult caregivers even though their role is seldom acknowledged.

Bastawrous says online resources or support groups connecting caregivers with one another may be an important way to support Canada’s growing army of adult child caregivers.  

But at this point, says Bastawrous, researchers know very little about the relationships between caregivers themselves.

Local support group might work 

“Maybe online networking is not particularly great for some caregivers,” says Bastawrous. For some caregivers, a local support group might work better.

“Once I get my data,” says Bastawrous, “it’ll be interesting to find out how personality and circumstance play into it.”

But for the so-called sandwich generation, just finding time to participate in a survey can be a challenge.  

It’s not that people aren’t interested, says Bastawrous. In fact, many caregivers have been retweeting contact details for a pre-screening survey of the study Bastawrous is proposing on the relationships between caregivers.  

“People will answer the pre-screening questions,” says Bastawrous, “but they get stuck on the longer survey which takes about 25 to 30 minutes to fill out because they just don’t have time to finish it.”

If you're interested in participating in the survey go to: http://www.fluidsurveys.com/s/caregivingstudy/ or email Marina Bastawrous at: marina.bastawrous@utoronto.ca