Does your family know your personal health history? Or is it your personal secret?
I recently found out that my latest routine mammogram revealed two one-centimeter nodules in my left breast. Alarmed by these results, I tried to recall whether or not I had a familial risk or predisposition to breast disease and breast cancer. I was so anxious, I needed to talk! The first person I called was my husband. He offered supportive words and reassurance, advising me to not panic. The second person I called was my younger sister Roslyn, who is also a registered nurse.
A few years ago Roslyn had a mammogram that revealed a cyst in her breast; it was treated and aspirated through a fine needle. At that time, Roslyn confided her diagnosis to me but made me promise not to tell Mom. Now, as I told her about my own health problem, Roslyn again tried to persuade me not to tell our mother, because “Mom will worry!”
Later, though, I thought more about my discussion with Roslyn. Against her advice, I decided to tell Mom and other family members about the result of my mammogram. Mom took the news very well and told me that she had had a benign nodule removed from her right breast over 20 years ago. My sisters and I never knew this! Breaking the cycle of secrecy for the first time, Mom told Roslyn and my three other sisters about her history of breast disease. For years, we had all been answering one question about our family health history incorrectly. That question is: “Do you have a family history of breast disease or breast cancer?”
For Nurses, Knowledge Is Power
This example of my family members keeping their personal health histories a secret is a familiar behavior in minority communities. From my professional experience as a public health nurse who has worked with African American and Latino populations for more than 15 years, I have observed that, for many reasons, people of color don’t share information about our health histories with our loved ones.
Often, culture plays a role in whether or not family members disclose information about diagnosis and illness to other relatives. For example, in the African American culture, especially among the older generation, the tradition is to “mind your business” and not discuss sensitive personal issues, such as health problems. Some minority patients try to shield their family members from what they perceive as embarrassing facts about their health, such as illnesses that stem from risky behaviors and poor health practices. They believe that revealing this information may bring shame, scorn or needless worry to their relatives.
Other barriers that can make it difficult for nurses to access and collect information from minority patients about a family member’s health history include poor memory and low health literacy. Many elders may have trouble recalling details or may not comprehend facts about their own diagnosis and illness, or that of other close relatives. Older persons may also regard their personal health history as “their business” and no one else’s.
Last fall, U.S. Surgeon General Richard H. Carmona declared Thanksgiving Day, November 2004, to be the first annual National Family History Day. Now in its second year, this initiative recognizes that the family health history is important for early identification, treatment and prevention of many diseases that are known to have a genetic link. This includes cancer, cardiovascular disease, diabetes, alcoholism and mental illness-all of which disproportionately affect minority populations. Genetic specialists, researchers and health care providers all concur that an accurate medical and family history is vital for assessing an individual patient’s health risks and predisposition to these serious diseases.
Armed with accurate knowledge of the family health history, the nurse can instruct and guide the patient in practicing good health behaviors, such as participating in screening for cancer, heart disease, glaucoma and diabetes. Nurses can also encourage their patients to take part in other primary health and wellness activities, such as exercise groups, nutritional counseling and smoking cessation support groups.
Therefore, nurses must assist and encourage their patients, with their significant others, to begin collecting and organizing health information and details about their relatives’ personal health histories, by doing face-to-face and telephone interviews and asking them to write the information down. Examples of information to be collected are current diagnoses or illness, age of onset, medications taken and allergies. Other types of information patients should obtain and record include instances of blood relatives, such as parents, grandparents and siblings, who have experienced or are experiencing similar diagnoses and illnesses. It is also important to list any relative who died before age 55, along with the cause of death.
The next step is to store the health history of the family members on a floppy disk or CD-ROM. As part of the Surgeon General’s initiative, the Department of Health and Human Services now offers a free computerized tool called “My Family Health Portrait” that can be downloaded at www.hhs.gov/familyhistory. Using this method, the histories collected can be easily updated and printed out as needed, so that the data can be made readily available to any health care providers your patients and their family members need to see.
Breaking the Silence
Prevention, diagnostic screenings and early detection and treatment are the keys to maintaining optimal health and wellness and eliminating health disparities. It’s time to break the cycle of secrecy among our family members. A lesson for my family and others can be found in the words of the poet Audre Lorde, who lost her life to breast cancer: “Your silence will not protect you.”
So let’s talk! As nurses of color, we can encourage our patients to talk and be honest and open with their family members, keeping in mind their privilege to keep their health information confidential. And even closer to home, sharing our own health histories with our family members is another vital link that can potentially save the lives of our loved ones, as well as future generations.
Alnisa K. Shabazz, RN, MS, is an assistant professor in the Department of Nursing and Allied Health Sciences at The Bronx Community College, City University of New York. She also leads health and wellness workshops for groups and individuals with actual or potential health care needs in various community settings in the New York City area.
More About the Surgeon General’s Family History Initiative
To encourage all Americans to learn more about their family health history, Surgeon General Richard H. Carmona, in cooperation with other agencies within the U.S. Department of Health and Human Services, has launched a national public health campaign, the U.S. Surgeon General’s Family History Initiative. Other federal agencies involved in this project include the National Human Genome Research Institute, the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality, and the Health Resources and Services Administration.
Surgeon General Carmona has designated Thanksgiving Day as annual National Family History Day because it is the traditional start of the holiday season for most Americans. Of course, this doesn’t mean that families should literally be discussing their health histories while they sit at the dinner table passing the turkey. The point is to take advantage of occasions when the whole family is gathered together to begin the process of collecting and recording this vital information.
The computerized “My Family Health Portrait” tool, available in English and Spanish, is an easy-to-use resource that walks users step-by-step through the process of organizing a family tree and identifying common diseases that may run in their family. When finished, the tool will print out a diagram of the family’s generations and the health disorders that may have moved from one generation to the next. To ensure privacy and confidentiality, families can download the tool to their own computer, create their health history and then save it to a diskette or CD-ROM so that no one else has access to the data.
For more information, visit http://www.hhs.gov/familyhistory.
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