Underserved Populations
Education and Support Needs for Underserved Populations of families with childhood cancer.
Stats to think about when it comes to childhood cancers in the African American communities. According to Cancer Epidemiol Biomarkers Prevention, blacks have a 76.4% survival rate with cancer than 82.7% of whites. While racial disparities exist, families of all backgrounds can struggle with underinsurance, financial strain, and systemic barriers to care. Let’s take a look at some of the factors that may contribute to these challenges and how we can help.
Variable Reasons
- Underinsured- Those with minimal insurance coverage do not cover things such as clinical trials, and needed housing during cancer treatments, and are at risk of losing free insurance coverage due to income change.
- Delayed Interventions- This could be for a few reasons. One is the fear of complaining of symptoms regarding their child only not to be believed or taken seriously. Another is having cultural traditions in depend solely on home remedies. This is “grandma”, “big mamma”, who did this and that when there was an illness in the family. So, if it worked for them, it would work for us.
- Time Off Availability- Not having enough paid time off to take the child to the doctor’s visit, treatment appts, or just being at home for the child’s sick days.
Let’s talk about each variable in more detail.
Some families might experience all of these or a combination of these.
Underinsured means not having private insurance, Medicare, Medicaid, public assistance, or Children’s Health Insurance. They can cover certain chemo medication, tumor testing, x-rays, and non-emergency medical transportation.
Uninsured means not having any medical insurance coverage. Paying all medical costs out of pocket. People may have had to choose this due to employers not offering coverage. They may have not been able to fill out the application for public assistance.
Challenges in Underserved with insurances.
- Public assistance insurance can be frustrating to fill out due to the terminology used
- Access to a computer
- Free transportation is available to doctor appts or clinic visits
Challenges in Underserved with No insurances.
- The need to use the ER for all medical issues
- Self-medicating
Delayed Interventions can be extremely hurtful for underserved populations. Tumors and treatable cancers are now complex to treat. The child experiences unnecessary prolonged discomfort from the cancer complications.
Programs out there to help combat these challenges for the underserved.
- Sassy Carmen, provides joy to the kids and their families battling cancer through support with transportation needs, errands, groceries, childcare assistance, and just having parties or fun photo shoots to just bring normality to the kids and their families
- American Cancer Society provides a 24/7 helpline, Hope Lodge service, transportation assistance, and nutritional services.
- Cancer Care provides free support for caregivers, like podcasts and helpful reading materials.
- Cancer Support Community provides social work services, education, and programs to guide families through the cancer battle.
- Caregiver Action Network provides a social network to support caregivers, and the community can give and get advice.
- Social workers, patient navigators, or oncology nurses with these programs can help with coordinating with no-cost or low-cost housing near the clinics.
Here’s just one example
Let us walk through a scenario that may be a possibility for a parent or guardian of a pediatric cancer patient. This is to help you visualize what may arise or be needed during this journey of battle with cancer.
“Temekia has a 10-year-old daughter with leukemia cancer. She is a single mom with 2 more kids, 6 yr old and 7 yr old. Her income just 25K a year and works at a local grocery store. She lives in a 2-bedroom apartment. Her daughter’s name is Jasmine. She is planning for 10 treatments of chemotherapy in a city that is 10 miles away. Temekia doesn’t have a vehicle. She takes the public transportation to get to work, the store, and the doctor appts. Her job has no insurance plan. She is on public health insurance Medicaid. Her family dynamics are strained, so not a stable support system available. Jasmine’s treatments are scheduled weekly. Temika uses the referral program from the social worker for her transportation to the clinic for Jasmine’s chemotherapy.
The day isn’t over…
At night after the kids are put to bed, she reads articles on Sassy Carmen and another online service regarding all the services available to her. She also follows the Cancer Support Community to speak with other families in similar situations. They give her advice on food boosters for Jasmine as well as her and the family. She files out the forms in her downtime to apply for utility assistance and rental assistance. On the way to work, she listens to Podcase on how to support Jasmine during her battle. Jasmine’s 4th week of chemotherapy requires her to get 3 treatments this week so Temekia uses the services to stay for free in a nearby home for her and her children, so Jasmine can make it to all three treatments this week.
At the last treatment session, Temikia was surprised by a celebration party hosted by Sassy Carmen for Jasmine and her family’s triumph challenges win. Temikia and Jasmine continued their support through the cancer society programs with education articles and support groups.”
There are many in need
Underinsured or Uninsured can affect all populations, but in African American communities it can affect all families involved. They can find it hard to navigate through a system that they feel is not supportive of them. Education is a powerful tool to help combat a lot of barriers faced by African American families with a child facing cancer. The available education is sometimes too complex to follow through or not in a language that is simple to follow.
So, education and support needs for the underserved community may be a little different than other groups. We must consider factors outside of a pediatric patient with cancer and their family. We must keep in mind the challenge of everyday living and then the added challenge of navigating through the healthcare system that they may have distrust to start. If we can acknowledge these challenges, we can provide support and education in a more impactful way.
References
Cancer Epidemiol Biomarkers Prev (2021) 30 (11): 2010–2017.
https://nationalpartnership.org/wp-content/uploads/2023/02/african-american-workers-need-paid-sick-days.pdf
https://www.cdc.gov/nchs/hus/sources-definitions/uninsured.htm
https://www.facingourrisk.org/support/insurance-paying-for-care/treatment/medicare-and-medicaid
https://www.fda.gov/media/122693/download
https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.html
