Aging, Community and Health Research Group (ACHRU)

McMaster University

About ACHRU

Patient and Caregiver Research Partners

Video: Insights from a Caregiver Research Partner

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.

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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.” She says she aims to use the motto of keeping it simple smart, just like her approach to her own medical appointments.

“I want to be helpful and useful. I don’t want to be sitting there just because I am old. I think what the researchers are doing is awesome (promoting optimal aging at home for older adults with multiple chronic conditions (MCC) and supporting their family caregivers) and it’s an important area that needs to be studied,” says the active community member, who also volunteers at a local café/food bank. “Especially as we are aging, we have to be cognizant of what older adults needs are.” 

 

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.”

When her Dad was diagnosed with dementia she started visiting the Alzheimer’s Society website http://www.alzheimer.ca and enrolled in their Next Steps education series. She volunteered to help with future research and got a call to provide a caregiver perspective on the ACHRU online toolkit called https://www.mytools4care.ca/.  

“It was helpful for me to be involved in the toolkit because I felt like I was able to contribute some personal experiences and share those experiences. I was interested in looking at trends in the scientific literature – it’s the nurse in me. It helped me stay connected and was a distraction from all the stress of caregiving.”

She says having a chance to review the websites gave her a different perspective. Having caregivers involved helps to make the research timelier, more relevant and engaging to people. Brenda is exploring additional opportunities to contribute to research and make positive impacts on the lives of aging Canadians.