Cancer impacts every race and ethnicity, but its effects can be magnified for those in certain groups due to access to health care, support and other related issues or concerns. For those who identify as Black, Indigenous and People of Color (BIPOC), advocating for your needs may improve the quality of your care and relationship with your health care team.
What Are Health Care Disparities?
Health care disparities refer to differences in access to health care. These occur due to race and ethnicity, sexuality and gender identity, income levels, age and more. Some challenges are built into the structure of systems and organizations. For example, according to the U.S. Census in 2018, people of Latino descent had the lowest rate of overall health insurance coverage. This may limit their access to care and therefore impact their cancer experience.
A provider might treat different groups of people in different ways. They may make assumptions about your beliefs, values, family structures and relationships. For instance, a provider may insist on discussing end-of-life care with a patient. They may not be aware that talking about death and dying may be considered taboo in that patient’s culture. Health care disparities are drawing more attention, especially those related to racial discrimination. Many organizations are discussing ways to improve access to care.
The Value of Your Identity
Your health care team is composed of experts in medical care. They share your goal of achieving the best care possible. However, their focus on medical issues may not account for your beliefs, values and traditions. You may interact with health care providers who do not understand your priorities.
Your cultural and racial and ethnic backgrounds are vital to your decision-making process. You should feel comfortable sharing any concerns you have. These may include treatment decisions, potential side effects, financial concerns, family responsibilities and end-of-life issues.
Based on your cultural beliefs, you may wish to avoid scheduling treatment or surgeries at certain times of the day or week or during holy times of the year. Your health care team may be able to adjust your treatment based on your needs. A different form of treatment can be just as effective, but can help you continue to work or study, pursue physical activities or attend important events like weddings and graduations.
An openness to each patient’s distinct identity and cultural traditions is growing within the medical profession. This is called “cultural humility.”
The Role of Self-Advocacy
Self-advocacy means speaking up for yourself and what is right for you. Health care decisions are your choice. You have control over your body, and you have the power and the right to speak up for yourself at any time. You are not required to agree to any procedure or treatment that you do not want or understand. Be clear and open about your comfort levels and needs. It is your right to ask for the best care for you or your loved one.
When speaking with your health care team, you can always ask a doctor or other provider to slow down or repeat themselves. If necessary, you can request an interpreter or find other means of communication. You should feel comfortable asking questions. Tell your team about any discomfort you have with their medical recommendations. Treatment should be appropriate for your values, beliefs, lifestyle and cultural traditions.
Finding Support From Others
Consider having a friend, loved one or patient advocate accompany you to your appointments for support. This companion can also help advocate for your needs. You could have someone you trust come with you to make sure you are heard.
They could keep notes during appointments and remember questions to ask. A loved one can also help speak with the doctor, especially if there is a language barrier. Interpreters may be available in some clinical settings.
In addition to members of your community, you may find support from organizations dedicated to experiences like yours. One might be Sister’s Network, dedicated to Black and African American women with breast cancer. Another is LatinaSHARE, which helps Latina women with breast and ovarian cancer.
Support groups can also provide connection to others who have had similar experiences. They can focus on cancer type, age group, role (such as caregivers) or special population. These populations might be Spanish speakers, young adults or those who identify as LGBTQ+. CancerCare offers a variety of live and online support groups throughout the year. You can find these on our site or by calling our Hopeline.
The Value of an Oncology Social Worker
CancerCare has professional oncology social workers on staff. They are dedicated to supporting you throughout your cancer experience. Social workers can provide guidance on how to speak to your health care team and make sure your cultural, religious or other beliefs are part of your care.
Edited by Angelique Caba, LSCW-R, and Yvette Colón, PhD, BCD, LMSW