When facing one of the most difficult challenges of their lives, many cancer patients and their families also have to deal with overwhelming barriers to care. Having a navigator to identify and remove those barriers can provide patients with the care they need and help to eliminate some of their burden. These common barriers to care and potential solutions to eliminate them were addressed by breast health navigator Sharon Gentry, RN, MSN, AOCN, CBCN.
Gentry outlined some of the types of barriers that nurse navigators commonly face:
Cultural beliefs regarding treatment. Although nurse navigators excel at the clinical component of cancer care, Gentry said that to correctly interpret the cultural beliefs of specific populations, it is best to include a community navigator or lay navigator.
Delay and refusal of care. According to Gentry, navigators will contend with people who refuse treatment, mostly because of fear. “It’s okay if they don’t want treatment as long as they’re making an informed decision; as long as you’ve tried to talk with them and explain to them the benefits they can gain from treatment,” she said.
Bias. African-Americans as a whole receive fewer cardiovascular procedures, organ transplants, orthopedic surgeries, cesarean sections, and lung operations for cancer compared with Caucasians. “Is it access? Are we not getting that information out to them?” Gentry asked, and stated that “We have to think about our own biases that we may bring into the situation. And we hope they’re not there, but we have to be truly honest.”
Language. In the United States, 1 in 5 people speaks a language other than English, and non- English speakers have greater difficulty understanding information from their doctor’s office.
Transportation. Gentry said that one of the main topics of discussion by patients is transportation arrangements to and from appointments. Citing a study by Electra D. Paskett, PhD,1 Gentry said the 2 major barriers most navigators spend their time on are “insurance and out-of-pocket cost, and transportation.”
Education. Nearly half of America’s adults are poor readers, or “functionally illiterate.” Gentry referred to a health literacy assessment test presented by E. Mullen at the Oncology Nursing Society’s 36th Annual Congress that can help improve communication. 2 “This is a three-minute estimate of adult literacy on medicine. [Mullen] says we often overestimate the patient’s ability to understand medical information. This three-minute test could evaluate patients without embarrassing them.”
Uninsured/Underinsured. Citing a report from the Institute of Medicine, “Too Little, Too Late,” Gentry stated that uninsured patients receive one-half the healthcare of insured patients, and that the uninsured die sooner than insured patients because of delayed diagnosis.
POTENTIAL SOLUTIONS AND RESOURCES
Gentry hopes that the Patient Protection and Affordable Care Act will be part of the answer to breaking down barriers to care, but she’s not certain that this will be the case. “The goal is to prioritize healthcare. It’s going to make it more affordable, it’s going to make it more accessible, and it’s going to make it accountable,” while promising to tackle disparities, said Gentry.
She focused on what the bill would do for navigators and how they will most likely interact with it. “It says it’s going to contain several provisions to improve healthcare access for racial and ethnic minorities and underserved populations. So number one, pay attention to what your census is telling you about what is going on in your community,” Gentry said.
“They’re going to have planning grants to states to facilitate promotion of medical homes for Medicaid enrollees with chronic conditions,” she said, adding that they will fund communitybased interdisciplinary teams to provide support to primary care practices and also fund consortiums of healthcare providers to coordinate and integrate healthcare services for low-income, uninsured, and underinsured populations.
“These resources will contribute to the existing care continuum; you are part of that now-existing care continuum so hopefully this is going to open some funds for you.” Gentry hopes that the bill will allow for more comprehensive case management, more care coordination, more health promotion, transitional care, patient and family support, and referral to community sources.
Until that happens, Gentry is focusing on ways to help those in need right now. She compiled a list of resources for navigators that they can refer to:
- Cancer Care. www.cancercare.org. Offers financial assistance, grants, counseling, and support groups.
- Georgia Cancer Coalition. www.georgiacancer.org. “There are usually programs in your state that you might know about,” Gentry said, such as providing free cell phone access for patients.
- NeedyMeds. NeedyMeds.org. Provides information on patient assistance programs.
- Partnership for Prescription Assistance. www.pparx.org. Helps qualifying patients without prescription drug coverage.
- Patient Advocate Foundation. www.patientadvocate.org. Provides patients with arbitration, mediation, and negotiation to healthrelated issues.
- Mautner Project. www.mautnerproject.org. Support organization for lesbians with cancer and their loved ones.
- The Tigerlily Foundation. www.tigerlilyfoundation.org. Focuses on young women who have breast cancer.
- Joe’s House. www.joeshouse.org. A lodging resource for cancer patients.
- Paskett ED, Harrop JP, Wells KJ. Patient navigation: an update on the state of the science. CA Cancer J Clin. 2011;61:237-249.
- Mullen E. Assessing health literacy of elderly cancer patients in clinical practice: what clinicians need to know. Oncology Nursing Society 36th Annual Congress; April 2011; Boston, MA. Poster 434.