Spring into Caregiving: OCHECE All-CAC Gathering Doubles Down

Author: Wendy Clem

The first in-person All-Cancer Action Council (CAC) gathering since 2020 was hosted by Karmanos Cancer Institute's Office of Cancer Health Equity & Community Engagement (OCHECE) on April 20, pursuing improvements in caregiving as its current Big Idea. Held at Detroit's Tabernacle Missionary Baptist Church, organizers added a hybrid option to accommodate all 11 CACs that span from rural Michigan – covering the Thumb, mid-Michigan and Northern Michigan – to the southeast part of the state with a diverse group of patients, survivors, caregivers and advocates.

Those attending shared spirited conversations and the revitalized energy of reconvening face-to-face to battle cancer and support community action. Input also came from CAC members attending the meeting through Zoom. Helmed by OCHECE co-facilitators Voncile Brown-Miller and Mikayla Harrison, the evening featured presentations, concluding with a group breakout session to narrow down core issues.

Robert Thomas of the Black Men's CAC announced the upcoming hybrid symposium, Black Men, Medial Mistrust, and Cancer: How Can Cancer Care Be More Trustworthy? This symposium takes place on May 20 and is open to all. During the event, the medical mistrust among black male cancer patients will be addressed. Participants have the opportunity to join in on discussions with doctors to build trust. There will also be a focus on cultural competency and a deep dive into implicit bias during the symposium.

Jasmine Vining, a leukemia survivor from the Young Survivors CAC, revealed how staying distracted aided in her journey. She highlighted the group's three key research areas: health literacy, social support and fertility preservation — all necessitating substantial resources. The Young Survivors CAC's goal is to get their findings to medical providers and other young survivors.

Caregiver Deborah Hill from the Conner Creek CAC spoke about the painful years of looking after her husband during his esophageal cancer battle and the frustration of not knowing what to do.

"I really had to guess so much of the time," she said, emphasizing the need for effective doctor-patient-caregiver communication. "I ended up navigating through my own guesswork."

Megan Landry, the Associate Director of Cancer Center Partnerships at the American Cancer Society (ACS), provided numerous ACS national resources available, including caregiving information, financial input and insurance assistance. Caring for her father, who had lung cancer, remains her inspiration.

"He's my 'why' I do this," Landry added.

Landry encourages using the Caregiver Survivor Guide and other references in the ACS bookstore with key info for adults and children. The ACS can mail resource material by request. Although Michigan currently lacks the ACS Hope Lodges for patients traveling for treatment, pre-arranged hotels offer free or reduced rates for families. She also recommends ACS ride programs for treatment transport and a caregiver video series, additionally downloadable as a PDF.

Keynote speaker Amanda Leggett, Ph.D., assistant professor at Wayne State University's Institute of Gerontology & Department of Psychology, detailed the numerous corollaries between caring for dementia and cancer patients, both of which are stress centered. She differentiates between formal care roles, like those of doctors or nutritionists, and informal dedication, like that invested by family and friends.

Referencing the saying, "the dark side of the moon, where caregivers live," Leggett reveals that 4.6 million Americans provide informal in-home cancer care for an average of two years. These are usually women in their 50s and either the patient's spouse or adult child, neither of whom is formally trained. She explained that a variation of caregiver PTSD can result within six months, usually due to unmet needs.

The evening concluded with a breakout session tasking CACs to determine caregiving needs within their corresponding communities. Results heavily centered on health literacy and psychological needs, financial concerns, sharing resources and patient engagement.

OCHECE plans to hold another meeting consisting of all CACs later this year. Learn more about CACS here.

ochece spring into caregiving 2023