Sociology professors from Florida State University (FSU) and McGill University found that a significant part of the time caregivers spend caring for others has been largely overlooked.
Miles Taylor, PhD, of FSU, and Amélie Quesnel-Vallée, PhD, of McGill, are now addressing what Taylor calls the structural burden of caregiving.
This burden includes the stress associated with navigating the healthcare system and the time caregivers spend negotiating treatment and services for their care recipients.
“Research up until now has really defined caregiving burden in terms of the amount of time and stress it takes to actually provide care to another person—helping with daily tasks and how especially difficult it can be when they need help with things that are very personal, like bathing,” Taylor said. She explained that while previous models of caregiving burden have done a good job of notating interpersonal stresses, such as strained relationships and the demands in the caregiver’s life, they have not articulated or measured the great deal of time often spent negotiating healthcare systems, getting the care, getting treatments, and figuring out when treatments will be covered and under which circumstances.
The pair want their research to inform healthcare professionals and policymakers about the issue, as well as the caregivers themselves. Taylor expressed a desire for caregivers to recognize that managing care and negotiating services is part of caregiving time and stress.
“There was a very recent caregiving report that said over half of caregivers are actually engaged in these kinds of tasks, yet we don’t quantify that…. So, that’s what we’re hoping to do, shed more light on it….”
This article was adapted from information provided by FSU.