Community-based support organizations are essential in helping black women in Memphis who have been diagnosed with breast cancer overcome barriers to care, according to a study.
The research was published Feb. 11, 2020, by the International Journal of Environmental Research and Public Health. Read “Who Can Help Us on This Journey? African American Woman with Breast Cancer: Living in a City with Extreme Health Disparities.”
How the study was done
The researchers conducted an in-depth focus group that lasted about 90 minutes with representatives from five community-based breast cancer support agencies. The agencies provide care to underserved black women who are at risk for or who have been diagnosed with breast cancer in Memphis, Tenn.
The researchers wanted to know what the agency representatives saw as challenges faced by the women they served.
The agencies in the study were:
- three breast cancer support groups
- a patient navigator organization
- the Tennessee Breast and Cervical Cancer Program
The services provided by the agencies include:
- monthly support meetings
- financial assistance
- referrals
- meals
- access to breast cancer screening
- medical copays
- wigs
- bras
- prosthetics
- help with enrolling in Tennessee Medicaid
- buddy services
The researchers found that the agencies were critical in helping underserved black women overcome barriers to care, including:
- fear
- lack of transportation
- lack of child care
- cost of medication
- lack of insurance or not enough insurance
“We have people — they get these drugs and they’re $900 a pill, you know, what do you do with that?” said one of the agency representatives during the focus group. “…[Insurance] does not cover that $900 medication and if someone in the office does not literally take it upon themselves to call the pharmaceutical company to try to set it [medication assistance program] up, then that’s a great barrier.”
“Gaps in death rates from breast cancer exist between black and white women in Memphis,” said Shelley White-Means, professor of health economics at the University of Tennessee Health Science Center and lead author of the study. “The national goal is to reduce breast cancer deaths to 20.7 per 100,000 females. In Memphis, while white women are close to meeting the 2020 goal, black women are not.
“There are community-based support agencies that are vital for the survival of African American women in Memphis with breast cancer,” she continued. “The work that needs to be done is to have a greater interaction between providers and the health care system and the community-based support groups.”
What this means for you
Many studies have looked at how support groups — whether in-person or online — can help women who have been diagnosed with breast cancer and have found that the groups can increase the women’s psychological and emotional well-being.
While not much research has been done on the agencies that provide support, the results of this study make sense. If a woman is worried about paying for her medical care or can’t get to and from a treatment facility, it’s going to add to any feelings of anger, sadness, and anxiousness she’s feeling after being diagnosed with breast cancer. If an agency can help solve some of these issues, it stands to reason that a woman might feel a little better.
If you’ve been diagnosed with breast cancer and aren’t sure how to build a support network, you might want to try some of these tips:
- Confide in family and friends. Family and friends can be an important source of support. They can provide comfort, go with you to appointments, help you with daily tasks, and just be there to listen.
- Find an in-person support group. Ask your doctor, social worker, or patient navigator if there are breast cancer support groups in your area. It can be helpful to meet with others who have been diagnosed and talk openly about worries, fears, and frustrations.
- Join an online support group. Online communities, such as the Breastcancer.org Discussion Boards, can offer emotional support at any time of the day or night. Members can post messages and receive answers and advice from others going through similar experiences.
- Ask your doctor to refer you to an oncology social worker, psychologist, or counselor. Talking with a professional trained in the psychology of cancer can provide valuable support. An expert can help you understand emotions such as fear, anxiety, anger, or depression and give you tools to manage your feelings.
- Talk to members of your spiritual community. Many people find comfort in praying or meeting with others in faith-based communities. If you don’t regularly meet with a spiritual group, ask if your hospital has a chaplain or other religious leader who can guide you to a faith-based organization.
- Talk to people at a community-based agency. As this study shows, local agencies can help people diagnosed with breast cancer overcome a number of barriers, including financial problems. Ask your doctor, nurse, social worker, or patient navigator for a list of cancer support agencies in your area. For example, the American Cancer Society has local programs in every state and also has a 24-hour, toll-free cancer help line that is available in more than 200 languages.
Written by: Jamie DePolo, senior editor
