Because of the volume of information available about cancer on the Internet or even through a simple phone call, it’s only natural to think anyone who needs the information on the disease will get it and understand it. But Mary Evans knows the basic need for information still exists in some communities.
The program manager in the UAB Center for the Study of Community Health, Evans is directing a project called CARES — Congregational Advocates Reaching and Empowering (Cancer) Survivors — in an effort to help those lost in their search.
The three-year endeavor is funded by the Lance Armstrong Foundation, American Cancer Society and Alabama Department of Public Health. The program aims to educate and empower cancer patients, caregivers and family members in under-served communities with knowledge, skills and tools to improve navigation of the health-care and support systems. That includes communication with health-care professionals and participation in decision-making across all stages of survivorship, from early detection and diagnosis through treatment, follow-ups, remission, cure and end of life.
“We’re focusing on how to help people who have been diagnosed get better information and make better decisions about their care,” Evans says. “We want to help anticipate their needs, connect them to available resources and support their access.”
CARES is a partnership with Congre-gations for Public Health (CPH), a non-profit organization of six African-American churches located in some of Birmingham’s oldest and poorest neighborhoods. In June, UAB, CPH and the other grant partners hosted congregational leaders from Jefferson County for a day-long conference, “Cancer Survivorship Issues in the African-American Community,” to galvanize pastoral support to address the broad range of cancer issues through health-ministry programs.
“Focus groups with cancer survivors conducted in the communities served by CPH prior to the conference showed that people weren’t connected to information or resources in a timely way,” Evans says. “They were asked to make decisions on their care when they weren’t fully aware of all their options.
“It’s not necessarily that they made wrong choices; they just were still uncertain that they had made the right decisions, and they had residual emotions about that,” she explains. “Because there are all these resources out there, I think we sometimes take for granted that people know about them and take advantage of them when they’re faced with serious illness.”
Access not there
Regardless of the amount of information on cancer available through various media, a significant number of people don’t know about – and can’t or don’t (for whatever reason) access it. Even individuals and families who are very knowledgeable and have access to resources in other realms of their lives struggle when they or a loved one are facing a serious illness. They have difficulties navigating the structure and culture of the health-care and community-based organizations that aim to help them.
Pastors in attendance at the conference affirmed the continuing need for information and messages about early detection and screening and the availability of low- and no-cost services. They recognize the importance of seeing positive images of long-term cancer survivors who “look like us,” especially those who successfully navigated the health-care and support systems despite lacking financial means.
CARES is important to Birmingham for a number of reasons, says Evans. Jefferson County has the highest cancer-incidence rate in the state. For many cancers — especially prostate, breast, cervical and colorectal — incidence rates are higher and mortality rates are much higher for African-Americans.
About 22 percent of Alabama’s African-American population lives in Jefferson County, and half of those live within one mile of a CPH church. Sixty percent of the families in these CPH neighborhoods live in poverty. Twenty-eight percent of those 25 or older have only a high-school education; 14 percent have less than a ninth grade education. These factors significantly increase the risk of late diagnosis and limit knowledge, access and use of services that affect cancer survivorship.
Looking for role models
CARES supplements existing programs by providing trained volunteers who, through one-on-one interventions, enhance access to information, resources and services and help cancer survivors become better advocates and participants in their health care. It also complements existing education and support programs with a network of knowledgeable outreach specialists at church and community facilities through which these programs can be delivered and reinforced in a community setting.
“One of the ultimate impacts of this project is for cancer survivors in these communities to have a trained team of church-based volunteers who will assist cancer survivors and their families to view cancer as a survivable illness,” says Linda Goodson, interim deputy director of the UAB Center for the Study of Community Health.
“A lot of times because people are so quiet about their illness, you don’t see the positive role models, the ones who are survivors,” Evans adds.
The project is beginning its second year and is developing and implementing a plan for each of the churches to identify, educate, coach and support cancer survivors, their family and friends in the congregation and surrounding neighborhoods.
To find out how you can participate, contact Evans at email@example.com or 975-8387.