“Family caregivers tend to dismiss their own self-care needs, and feel that their needs and their distress are illegitimate or selfish,” says Rinat Nissim, Psychologist, Department of Supportive care at Princess Margaret Cancer Centre in Toronto. “That’s why a dedicated Caregiver Clinic launched in 2017 at Princess Margaret Cancer Centre in Toronto with the hope that it will help legitimize family caregivers as a group with needs deserving of assistance. Addressing the well-being of family caregivers is beneficial to all parties – the caregiver, the patient, and the health care system.”
Here’s more of what this groundbreaking clinic aims to assist with:
Caregivers should be recognized as “patients in their own right”
Family caregivers make significant contributions to the overall care of cancer patients and can be seen as the “the invisible backbone of the health care system.” The health care system is relying more and more on family caregivers because of the increase in the use of outpatient cancer care services, as well as the increasing number of people who are living a longer life with cancer. Family caregivers of cancer patients typically provide emotional support, instrumental support (information, obtaining medical services), tangible support (transportation, household chores), and even medical support (administering medication). However, research and clinical experience consistently demonstrates that clinicians cannot only look at family caregivers as partners in care, but must also recognize that they may be “patients in their own right”, deserving of care. Studies at the Princess Margaret Cancer Centre, and in other settings, have shown that the levels of emotional distress and unmet needs reported by family caregivers are consistently equal to or higher than those reported by patients themselves.
Caregiver distress is not screened for or attended to
Most cancer care is organized around the patient as the target of care and caregiver distress is not screened for or attended to systematically. In order to address this gap in care, focus groups were conducted with family caregivers of patients of the Princess Margaret Cancer Centre. The goal was to understand caregiver-identified needs, and to brainstorm and explore with caregivers strategies to help them address unmet needs. It was clear from the focus groups that caregivers wished for a resource within the hospital that is dedicated to their needs. As a result, a dedicated Caregiver Clinic was launched in 2017 within the Department of Supportive Care at the Princess Margaret Cancer Centre.
The Caregiver Clinic is focused on clinical care, research and education
Adult family caregivers of cancer patients seen at the Princess Margaret Cancer Centre can be referred or self-referred to the clinic.Family caregivers referred to this clinic have a chance to meet one-on-one with a psychologist in order to review and address their needs. Additional information on the referral process and how to book an appointment can be found here. In terms of clinical care, it currently offers a weekly caregiver clinic.
Although family caregivers of patients who are treated outside of Princess Margaret cannot attend this service, they may benefit from the resource page on the Caregiver Clinic webpage.
For more information on The Caregiver Clinic at Princess Margaret Cancer Centre, click here.