February 6, 2017, by Pat Morden, Caregiver Exchange
Carole Ann Alloway’s husband had nine ankle surgeries because of a stubborn infection that resurfaced each time. “I kept asking why he was getting this infection but no one would answer me. Finally, the surgeon called in an infectious disease expert who realized the infection was caused by a plate put in his ankle 25 years earlier. “I think we could have saved him some of those surgeries, if they had just listened sooner.”
It’s a common frustration for caregivers. Rather than being valued members of the hospital care team, they often feel ignored or undervalued. And that, say Shearkhani and Alloway, is a missed opportunity. “If health care providers listened to caregivers, it would be better for the patient,” says Shearkhani. “But it would also be better for the providers and save the system money.”
How do you make your voice heard? Alloway simply persisted. At one point, she glimpsed a chart that described her husband as “a pleasant 69-year-old man with a difficult wife.” Hurt at first, she eventually came to take pride in that description. Shearkhani, who was only 28 at the time, says she sometimes had to cry to get what she needed.
Eventually they found each other. Together they learned more about caregiving and began to connect with other caregivers. “By being involved and helping others I helped myself,” says Shearkhani, who is now a PhD student at the University of Toronto.
Wanting to improve the experience of all caregivers, they approached Sinai Health System’s Bridgepoint Active Healthcare and subsequently, WoodGreen Community Services. Says Dr. Kerry Kuluski, Scientist at Sinai Health System’s Lunenfeld-Tanenbaum Research Institute: “After hearing Sara and Carole Ann’s stories and ideas, there were clearly some synergies in the work they were doing and the programs we were developing.” Now they’re all part of an innovative project, supported by the Change Foundation, to build a caregiver-friendly environment from hospital to community.
“The first step,” says Alloway “is to educate health care providers about how and why to engage with caregivers. While that’s adding to their duties in the short term, in the long run it will save money.” Alloway wants to see a system that identifies caregivers at the beginning of the care process and recognizes and involves them at every step of the journey. Shearkhani agrees. “We need people to identify themselves as caregivers and recognize that what they do is valuable.”