“An Engaged Caregiver” (Rochelle Prosser, RN, CLNC)

June 12, 2024 - Cancer Patient Lab Meeting #101
Discussion forum: community.cancerpatientlab.org
“As a nurse, I was the one to do the caregiver services. Having to be that person to navigate their care, knowing that there isn't any treatment available at the time of their diagnosis. I needed mental health services, but nobody offered it to me. They just assumed that because I was a caregiver, I didn't need to have that struggle, I didn't have those issues that regular caregivers go through in terms of finding quality and balance in life.
“Some of the behaviors that you see are because of the drugs. It's not that your loved one has changed, it's the drug that you're dealing with, and how to communicate best with that person while they're in that event. It's looking at it with a different lens, without blame.” - Rochelle Prosser
Meeting Summary
Family members can make a huge difference in the outcomes of the care of their loved ones.
How can you be an effective caregiver for your loved ones? What does an engaged caregiver look like?
Rochelle Prosser, RN, CLNC, founder and CEO of Orchid Healthcare Solutions, the Prosser Cancer Library, and founding member of the CancerX Moonshot, is uniquely qualified to be a role model as an exceptional caregiver to help family members navigate their care. She brings a special combination of (1) a professional background as a nurse (30 years), (2) her role as a caregiver to family members with cancer, and (3) her knowledge of data science. Rochelle spent 15 years assisting multiple family members through harrowing cancer journeys. Her daughter was diagnosed at age 4 with a rare brain cancer. The standard of care had a very low success rate, so Rochelle did the research and pioneered an alternative treatment. After 10 years, her daughter achieved remission this year when most patients with a similar diagnosis don't live past 12.
Rochelle created Orchid Healthcare Solutions to give back and help vulnerable populations and communities of color navigate their oncological journeys so they have the care and resources she had to fight so hard to find. She didn't want anyone else to have to go through what she went through. She offers an approach to cancer survivorship, a software platform, and a decision-support system for clinicians. She works with her patients and doctors, often explaining treatments to doctors that they may not know about. She also sits on a federal council on health IT.
What are the challenges that caregivers to cancer patients experience in navigating the care of their loved ones?
Caregivers to cancer patients face all the challenges that patients face:
● Knowledge to participate in care decisions: Lack of knowledge about the disease and testing and treatment options, access to trustworthy sources of information
● Treatment selection and access: Access to therapies (off label, reimbursement), acute care in cancer treatment; managing comorbidities along with the cancer
● Effective communication with healthcare providers: knowing what you need to let the doctors know about, overcoming reticence to honestly share what you are experiencing
● Administration: Navigating the complex and dis-integrated medical and payment system
Caregivers also face unique challenges:
● Emotional distress and anxiety: helping their loved ones overcome fear, trepidation, concerns about altered body image, the impact on relationships - for example, overcoming a family history where going into the hospital means you may walk in, but you're coming out feet first; maintaining a marriage with the stress of cancer
● Finding mental health resources (for the caregiver, as well as the patient)
This session discusses what you can learn from Rochelle Prosser’s experience as a very knowledgeable caregiver in navigating cancer care, including:
● Get mental health support as a caregiver
● Manage side effects aggressively
● Search for quality care
● Explore financial sources
● Step back as a caregiver
What should you do?
● Review the personal experiences of empowered and engaged caregivers and patients to provide guidance on your journey
● Work with your providers to make sure they understand your needs and priorities
● Connect with Rochelle Prosser for discussion about support options as you navigate your care decisions, especially if you are a caregiver
Full transcript: docs.google.co...
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