Caregiver Support is Paramount-CFN Fellow Sara Shearkhani’s Story

May 22, 2020

Hi, I’m Sara Shearkhani. I’m a PhD candidate at the Institute of Health Policy, Management and Evaluation at the University of Toronto. My research focus is on the economics of caregiving. I am an interdisciplinary fellow supported by the Canadian Frailty Network which has afforded me an opportunity to work with trainees and mentors from different disciplines such as psychology, medicine and epidemiology. In addition, the external placement offered me a chance to work outside of academia and my comfort zone; as a result, I have been able to expand my professional network and learn new skills. I also got to work closely with a caregiver mentor on my research; their lived experience has deeply informed how frailty is measured in my research. It has been very rewarding.

I got interested in this research area entirely from personal experience. My husband was diagnosed with a cancerous brain tumour and has had many episodes of intense treatment. I felt unsupported, often alone and isolated. I also had some pretty troubling experiences with healthcare providers that didn’t listen to me and ended up causing harms to my husband. I helped to start Family Caregiver Voice and made it my life’s calling to improve the health care system for all caregivers and for seniors in particular.

Currently, I’m very focused on finishing my PhD research under the supervision of Dr. Walter Wodchis. My research is focused on quantifying the health care cost associated with informal caregiving for older adults. This means that I want to understand whether caregivers change the ways that they use the health care system – do they use more because their own health suffers, or do they use less because they are too busy caring for loved ones and they neglect to take care of their own health. Another study is examining how caregiver distress affects the costs of care for the patients they are caring for, for example, by delaying long term care home placement. I want to be able to understand and measure the many other economic aspects of caregiving like personal costs and loss of income, but the healthcare utilization hasn’t been studied well before and it’s a good place to add new knowledge. How to best support caregivers has always been a matter of debate; my research can shed light on this issue. If, for example, caregivers use the healthcare services more due to their caregiving responsibilities, it means more investment needs to be made in interventions that target caregivers’ health preventing them from becoming patients themselves. After all, preventative measures can be more effective and less costly that downstream solutions. If caregivers neglect their health, then we need to figure out how to make care services more accessible to them accommodating their busy lives. The end goal is to better understand the needs of caregivers so health and social care services can do a better job of meeting their needs.

COVID-19 has changed many aspects of my life but my thesis work is primarily being done using administrative databases that were routinely collected in prior years so I’ve been able to access and analyze that data without any major interruptions. I’m also using my economics background in a research project to understand the health effects of the economic slowdown caused by COVID-19.

As part of my CFN fellowship, I have a placement with the Regional Geriatric Program of Toronto. Given the crucial role caregivers play in keeping older adults living with frailty, who are disproportionally affected by COVID-19, safe and healthy at home, we decided that my skills can be best used in developing educational resources to support caregivers. I have been interviewing caregivers by telephone to better understand their needs and find out how their responsibilities have been impacted by COVID-19 and physical distancing measures. For example, I have heard how cancellation of day care programs not only affected care-recipients but also caregivers. It has robbed care-recipients from social activities impacting their mental health and have robbed caregivers from some well-deserved alone time. I also heard about positive experiences such as learning new skills like using Zoom. Talking to many resilient caregivers who are trying their best to overcome challenges imposed by COVID-19 has made me more optimistic about the future: this too shall pass!