When caregivers — considered by many to be an essential part of a patient’s care team — have the tools they need to care for themselves and their loved ones, cancer outcomes can be better, too.
With ovarian cancer and its treatments potentially bringing on more than a dozen symptoms at once, caregivers may begin to feel burnt out as well. A web- or app-based strategy may be an innovative solution to symptom management and patient-provider communication, according to research conducted at the University of Pittsburgh School of Nursing.
“(Ovarian cancer symptoms) makes it extremely overwhelming for patients and their family members, but also for health care providers. With the current pressures in our health care system, there’s very little time for providers or patients to talk about symptoms … and so for patients, they end up tolerating or suffering through symptoms,” Heidi Donovan, a professor of Health and Community Systems at the University of Pittsburgh School of Nursing said in an interview with CURE®.
A Sense of Control
In an effort to combat this, Donovan and her team created web-based interventions (one that was self-led and one that was led by a nurse) to help patients track their symptoms, set goals and receive strategic help on the difficult situations that they are going through.
“In a study we published, we found that both the nurse-delivered and self-directed (web-based symptom management tool) were equally good at giving women a better sense of control over managing their symptoms,” Donovan said.
After the success of the app, Donovan wanted to make the tool even more user-friendly and turn it into a mobile app. So, she called on Haomin (Leon) Hu, a rehabilitation science PhD student in the Department of Health Information Management at the School of Health Rehabilitation Science at the University of Pittsburgh. Together, they are working on a mobile app that will help not only the patients, but their family caregivers who are at home helping them, too.
Caring for the Caregiver
“There’s a trend that more caregivers also need to take care of themselves while providing care to their loved one,” Hu said. “That’s why we’d like to base (our project) on this foundation and establish a more complicated system that will also provide features for family caregivers to either improve their caregiving skills or teach some problem-solving skills, as well as providing some quick tips and tools for when they’re providing care.”
Donovan, who said that family caregivers are at the “core of our health care system,” is hoping that by making caregivers more equipped to handle their loved one’s needs, that patient outcomes will be improved as well.
“We are really trying to prevent negative outcomes for the family caregiver, while also helping them to be the best caregiver they can for their loved ones,” Donovan said.
The app — which is expected to be released sometime next year — will raise awareness for family caregivers about the stressors that they are going through (such as financial problems and education about the disease), while validating their feelings and undergoing a risk assessment of emotional and physical symptoms.
“Distressing physical or emotional symptoms can add to the stress of cancer for both patients and their family caregivers, especially if (they) don’t have good strategies for managing symptoms,” Donovan said, noting that the app will offer resources on how patients and their loved ones can improve their physical and emotional well-being.
Tips for improving caregiver stress range from evidence-based practices like breathing exercises to setting reminders for asking other friends and family members for help with tasks that need to get done. While some caregivers may feel guilty by delegating tasks, a much-needed break is essential for those who are constantly looking out for a loved one.
“Caregivers are an essential part of our team, and they deserve our support, right alongside patients,” Donovan said. “We can’t do it without them.”
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