Wednesday, July 24, 2024

Caregivers Speak Up: An In-Depth Online Survey Reveals Their Concerns, Hopes And Dreams

When researcher Andrew Magnaye asked more than 700 caregivers in a nationwide survey their goals and how technology played into their social network, he was pleasantly surprised at the number of respondents. But he wasn’t surprised with the findings.

“We must find caregivers’ expertise and engage them with those people who are creating technology,” said Magnaye, sharing the survey results at the AGE-WELL conference in Vancouver last year. The event brought together leading researchers around the world to discuss the path forward to healthy aging.

Caregivers responded robustly to an online survey about their needs and wants. Photo: Flickr/Creative Commons, PurpleLorikeet.

The main objective of Magnaye’s PhD research is to describe the unique experiences of immigrants to Canada who provide care to family members and friends with long-term health conditions or problems related to aging.

“In particular, I am looking to assess the needs of culturally diverse immigrants providing care both domestically and internationally, while simultaneously balancing paid work obligations,” he says. “Evidence from my research will improve our understanding of and ability to support those who continue to give much of themselves to others, not only within Canada but around the globe.”

“Evidence from my research will improve our understanding of and ability to support those who continue to give much of themselves to others.”

Magnaye is passionate about his research. It stems from family experiences growing up. “My elderly relatives and parents taught me the importance of enjoying their lives into old age,” he notes. “My biggest influence was my grandma. She immigrated to Canada from the Philippines in the 1980s to care for my older cousin and grandma moved in with us in 1990 when I was born.”

Although he is just 28 years old, his youth shows how aging impacts us all.  In his department at the University of Alberta, the Research on Aging Policies and Practice (RAPP) team looks at the consequences of, and the intimate lives of caregivers. The main impetus of the survey was to determine caregiver goals.

“We realize that family caregivers are often looked at from a deficit perspective, or from a needs-based perspective,” explains Magnaye. “Often family caregivers are a population of people who are lacking resources, finances and time to adequately care for their loved ones.”

Giving caregivers a voice was important to researcher Andrew Magnaye. Photo: Flickr/Creative Commons, McBeth.

He and his team (about 10-15, including grad students) took a few months thinking about the questions before launching the survey online for about six months to collect data. Their recruitment strategy involved Huddol, an online collaborative community that links caregivers across Canada.

“It provides a unique environment where you can find people dealing with common caregiving episodes; communicate with one another, and help with local and professional organizations to get a leg up in your caregiving journey,” says Mangy. They also worked with other organizations, including Care Canada and CARP, who distributed the survey through their own online mailing systems. Local Home Care Associations also got the word out.

The survey was designed to mainly address caregivers’ mental and physical health and financial needs. In a nutshell, caregivers wanted more time, money and sleep. “My mom told me that this combination would be paramount for grandma. Even if two of the three needs were met, she could have fulfilled her responsibilities much better,” says Magnaye.

Enhancing caregiver well-being – The survey

The first section of the survey asked if there are things caregivers want to accomplish related to specific aspects of their own lives – health, education, employment, finances, relationships with friends and family, mental and emotional wellbeing and caregiving.  Respondents are then given the opportunity to say how important specific goals related to each of these aspects are to them.

The second section focused on technology and how it might help meet some of their goals. (Think computers, tablets, smartphones, apps, or internet-based tools.) The researchers wanted to find the current role that digital technology plays in their everyday life, beliefs about these particular tools, and their ideas for innovative products and services that might help better meet their goals to enhance well-being.

Findings from the Survey

It was “eye-opening” to discover how many caregivers took the time to do the 15-minute survey given that their time is stretched so thin during the day. But Magnaye says the depth of detail in their answers and stories was breathtaking. Some of the questions were open-ended. For example, “As a caregiver I wish I had…” The responses to this question alone covered over 40 pages.

“If you give caregivers an opportunity to speak up, they will. But getting that opportunity is difficult,” adds Magnaye. “I had that chance at the AGE-WELL Science Slam but millions of caregivers across Canada have unique and valid stories that could really help push the agenda forward for them.”

Survey goals

Magnaye thinks caregivers are told that ‘this is what you are going to get’, (and hope that is enough) rather than being part of the decision-making process.

“We want to give caregivers a voice,” he says. “We are going through the data now and working on an analysis plan to see what kinds of long term goals we can pull through this survey. Our team has seen how much income is lost when an employee, who is also a caregiver, doesn’t move up the ladder. And the majority are women. Our ultimate goal is to see better provisions and policies in place with employers, such as compassionate work leave policies and flexible work schedules. Above all, we want caregivers to be more empowered and be part of the discussion in Best Caregiving Practices.”

Must reads

The Latest from YouAreUNLTD