Gail juggles the demands of being a family caregiver and yet still makes time to be an Aging, Community and Health Research Unit caregiver research partner. In this short video she shares her experience and perspectives about caregiving and sheds light on what researchers really need to know when working with caregivers as research partners. Listen as she reveals what has worked well in partnering with research teams and the benefits she sees of being a caregiver research partner.
Patient & Public Research Partners
Patient Research Partner Profile: Patricia
Like many older adults with several different chronic conditions, Patricia knows what it’s like to have countless medical appointments, tests and procedures with different medical specialists. Navigating the health system is one of the biggest challenges for older adults, she says. Often, seniors don’t think their questions are important or worth the time for medical staff.
But over the years she says she has learned to give her input and ask the right questions. These skills assist her in her role as a patient research partner with the Aging, Community and Health Research Unit (ACHRU). She wants to help others, so she shares her knowledge and experience from a patient’s perspective with ACHRU’s research teams. She says involving patients in the research process is a positive step. She attends workshops and team meetings she has been invited to, gives verbal and written feedback, and is not afraid to ask questions.
Sometimes it’s difficult to incorporate the patient’s perspective, but it’s important, she says.
“A lot of things are being thought out well and the researchers are addressing the issues. It’s academic (writing style) though, so they need to translate it into the language of the people.”
Caregiver Research Partner Profile: Brenda
Brenda was a professional caregiver for many years as a nurse, but when she retired several years ago it coincided with the need to become a family caregiver to her father. She noticed her Dad and step-mom were having difficulty living at home on their own, so she and her husband decided to move closer to them and eventually her parents moved in.
She says the biggest challenges older adults face is the loss of many things like their independence, mobility, cognitive abilities and social interactions. “My stepmom was starting to have a lot of falls and she was doing things like leaving a pot on the stove and going to have a nap.” The retired nurse knew they were no longer able mange on their own, but she wanted them to maintain an optimal quality of life. So her parents moved into the main floor of the house and she and her husband moved to the basement.
“I didn’t want to do everything for them. I wanted to help them be independent and still have control over their life.”