Recognizing Carers in Canada and Understanding Their Barriers to Technology Adoption
Author(s) & Credentials: Jacquie Eales, MSc; Janet Fast, PhD; Louise Demers, PhD; Michelle Plante, MSc
Affiliated Institution(s): University of Alberta, Université de Montréal
Acknowledgements: AGE-WELL NCE, Canada’s technology and aging network, and the research from the set of 11 projects that focus on understanding caregivers’ needs how technology could be used to meet those needs (WP2).
What inspired you to begin researching this area? Describe the main issue or challenge you intend to address with this project.
On the first Tuesday in April we celebrate National Carers Day to recognize and thank the 1 in 2 Canadians who have ever provided care for a family member or friend with a chronic health condition, disability or age-related needs. It’s not a matter of IF you will become a carer, but rather WHEN in your life you will become one.Care to family members and friends is foundational to meeting care needs and to sustainability of publicly funded health and continuing care systems. Replacing carers’ labour would cost the Canadian health and social care system a conservatively estimated $66.5 billion, equivalent to 1/3 of all expenditures on formal health care services. With family carers being the major care provider to their loved ones for little to no compensation, caring can increase financial burden, levels of stress, and strain relationships among family members.
Briefly summarize your research project.
AGE-WELL NCE, Canada’s technology and aging network, supports research about carers’ needs and how assistive technologies (AT) may help address these needs. Over the past four years we have learned how caregiving impacts (positively and negatively) carers’ own health, relationships, finances and employment. AT have been developed to reduce the negative consequences. But uptake of AT is often slow and uneven. Even when AT are adopted, they’re often soon abandoned by carers with little time to learn something new or problem solve when AT doesn’t work as expected.
Discuss some of the past, present, and/ or intended future real-world applications of this research.
Our projects are driven by listening, early and often, to carers’ stories and experiences. Working with carers has shifted our focus from needs (deficits) to goals (strengths). Caregiving is just one part of their busy, complicated lives: jobs, school, raising a family, and multiple simultaneous caring responsibilities. When surveyed last year, carers’ top-ranked goals were to enhance their physical, mental and emotional health and strengthen their social connections. In short, carers wished for more time, more help and more money. Navigating a fragmented system of supports and a vast amount of online information is time consuming, frustrating and overwhelming. Who do you trust to guide your care journey?
AT have the potential to support carers, but only if they are appropriate, accessible, and sustainable. Nearly all carers surveyed used digital technology every day, but only two-thirds used it to integrate their care work with the rest of their lives. Carers may decline to adopt technologies because they’re not aware of what’s available, because it doesn’t solve their problems, because they can’t afford it, because they don’t have reliable internet access, because they don’t have the skills to engage with it, because they don’t have ongoing support through the adoption process, or because the person they’re caring for won’t accept it. After all, caregiving is not just about ‘doing care’; by its very nature it involves being in relationships with other people.
If applicable, identify any important policy implications this research may have.
Public policy plays a role in addressing some of these barriers. Despite carers’ interest in using AT to enhance their care, they may not be affordable or reliable, for example in rural or remote communities. Living in rural settings isn’t a significant predictor of carers’ ability to use and understand digital information, but it does predict their internet use. Governments can help ensure equitable internet access by continuing to develop infrastructure, especially in rural and remote regions. For example, the federal government’s Connecting Canadians program is extending and enhancing broadband infrastructure to reach previously underserved communities, some for the first time. Internet access can also be improved for those without personal computers or a data plan by enhancing public library services and ensuring internet fees are affordable. Compared to other countries, Canadians pay among the highest rates for home internet and mobile wireless access.
Some carers may lack the skills needed to interact with digital technologies, leaving them frustrated and products abandoned. Older carers’ digital literacy skills may be lower than their younger counterparts’, but other factors such as education, income, employment status and immigration status are more important in determining their ability to access, use and comprehend digital information and tools. Policies and programs that improve digital literacy education and training, especially for marginalized groups, can help.
AT must be affordable for carers who often weigh price against effectiveness. Some AT (e.g. wheelchairs and other mobility aids) is subsidized for eligible care receivers. But carers are not considered ‘clients’, making them ineligible for subsidies for AT to support their own needs, so they pay the full cost. Amending health and continuing care policies to make carers eligible for their own AT subsidies would improve access. So would participation of other third party payers such as insurance companies and employers.
Finally, better financial assistance for carers experiencing financial hardship because of their care-related expenditures would also make a difference (e.g. caregiver tax credits; carer benefit; pension credits). More than 40% of Canadian carers have care-related out of pocket expenses, 18% of whom experience financial hardship as a result, often using or deferring savings or borrowing to cover extra costs, putting their own financial futures at risk. Carers deserve public policies that ensure the sacrifices they make today will not come back to haunt their futures.
Personal communication with Dr. Janet Fast (University of Alberta), March 19, 2018 based on unpublished analysis of Statistics Canada 2012 General Social Survey on Caregiving and Care Receiving.
Canadian Institute for Health Information (CIHI) (2014). National Health Expenditure Trends, 1975 to 2014. Retrieved from CIHI website http://www.cihi.ca/web/resource/en/nhex_2014_report_en.pdf
Dobby, C. (published August 11, 2016 and updated May 16, 2018). How Canada’s Internet, wireless rates compare with international prices. The Globe and Mail. Retrieved from https://www.theglobeandmail.com/report-on-business/how-canadas-internet-wireless-rates-compare-with-international-prices/article31379589/
Tags: aging in place, caregivers, caregivers awareness, caregiving, caregiving awareness, carers day, carers day 2019, caring at home, healthy aging, national carers day, national carers day 2019, older adults