Caregivers need support too
Karen McConnell, caregiver, Windsor
Dr Camilla Zimmermann, researcher and palliative care doctor, Toronto
Society-funded research showed caregivers had worse quality of life if they were women, were caring for patients who were more ill, and spent more time providing care.
Early access to specialized palliative care teams may improve the quality of life of both patients and caregivers.
Karen McConnell, a 52-year-old nurse in Windsor, cared for her father, mother and uncle while they were going through advanced cancer. Her father Ken’s death from multiple myeloma in 2002 happened very fast and was a shock to her. When her mother Leona was diagnosed with lung cancer four years ago, Karen was her main caregiver for over a year. “I was there 24-7 and fuelled mainly by adrenaline. It was mentally and emotionally draining,” says Karen.
Karen received some assistance from her family and community services, but she wishes more support had been available. “I didn’t sleep well and lost weight. It would have helped to have someone sit and talk with me, and ask how I was doing,” says Karen, also a partial caregiver for her uncle Eric, who died of esophageal cancer in 2014. Both her mother and her uncle spent their last days at the hospice, allowing Karen to focus on being a daughter and niece, not a caregiver.
Caregivers play an important role in taking care of their loved ones with cancer and providing emotional support, yet they don’t always receive a lot of support themselves. With Canadian Cancer Society funding, Dr Camilla Zimmermann, head of palliative care at the University Health Network in Toronto, is leading research to understand factors that affect the well-being of caregivers.
For example, she found that the mental health of caregivers was worse if they were women, or if there were changes in the caregiver’s work situation, such as cutting back on hours at work or losing their job. Caregivers’ mental health was also related to the patients’ emotional well-being and worsened with more hours spent caregiving.
These results were part of a trial led by Dr Zimmermann that studied early referral to a team of health care professionals specialized in palliative care for patients with advanced cancer. “Our study showed that early palliative care improves quality of life for patients with advanced cancer, which would also lessen the emotional and physical load on their caregivers,” says Dr Zimmermann.
She is completing a follow-up study to determine whether early access to palliative care improves quality of life for caregivers as well. “If we’re helping patients, we’re also helping caregivers, but there could also be effects directly on caregivers,” says Dr Zimmermann. “Our results show that nurses and family caregivers developed a close relationship, and caregivers felt they could call at any time to receive information, which is an extra layer of support.”
Karen strongly believes that caregivers need more palliative care support early on. “This support would allow families to plan better and give patients a voice in saying what they want. A team with palliative care expertise could help families with decisions and take some of the burden off the caregiver.”