Empowering Parents — And Their Girls
In a city where cervical cancer disproportionately affects black and Hispanic women, it would seem laudable if a law helped pave the way for girls to receive a vaccine that could prevent a disease that leads to that cancer. But when the disease is HPV and is commonly confused with HIV, and, without education, the law appears to require that girls be vaccinated before being allowed in school, it hasn’t succeeded. That’s what has happened in the nation’s capital.
The District of Columbia has one of the highest incidence rates of cervical cancer in the U.S. In women, HPV (human papillomavirus) is responsible for 70 percent of cervical cancers. But since 2006, there has been an HPV vaccine approved by the U.S. Food and Drug Administration to prevent the virus that can lead to cervical cancer. The vaccine is safe, and effective for males and females. The U.S. Centers for Disease Control and Prevention (CDC) recommends that all girls who are 11 or 12 years old get the three shots to protect against HPV. In October of this year, the CDC also recommended that boys be vaccinated.
In 2007, following the CDC’s recommendation for females, the D.C. council passed legislation mandating that girls entering the sixth grade must get the vaccine or opt out — that is, sign a waiver declining vaccine. However, “many parents believed that they were not getting enough information from the schools or the City to make an informed decision about the HPV vaccine,” says Sherrie Wallington, Ph.D., assistant professor of oncology and program director of the health disparities initiative at Georgetown Lombardi Comprehensive Cancer Center. Moreover, several parents, particularly those in the minority and underserved communities, said they were forced into making a decision to vaccinate their daughters for fear that the daughters would not be allowed in school otherwise. These parents did not understand that they could opt-out or if they did, how to do so.
“Parents do not know what HPV is or that it is related to cancer,” says Wallington. “They don’t understand the benefits of the vaccine, why it is mandated, or how to opt-out of the vaccine. The lack of knowledge about HPV and the vaccine is an issue that affects parents across racial, ethnic, and socioeconomic lines, but is especially problematic in minority and underserved groups — the very populations found to be most at risk for cervical cancer.”
Empowering parents through education
Wallington is addressing these issues through targeted health communication strategies. While completing her postdoctoral fellowship at the Harvard School of Public Health and the Dana Farber Cancer Institute in 2009, she was recruited by Lucile Adams-Campbell, Ph.D., associate director of minority health and health disparities research at Georgetown, to help develop cancer prevention interventions with emphasis on the role of health communications in reducing cancer health disparities among diverse populations living in D.C.
“To make informed health decisions, individuals need accurate, complete, and easy to understand health information. Once people have access to accurate information that they can understand, they feel empowered and are able to make informed decisions,” Wallington says.
Wallington has conducted her research in three of D.C.’s most medically underserved neighborhoods — Wards 6, 7, and 8, where Georgetown’s Office of Minority Health and Health Disparities and Research has established a community partnership to address such topics as physical activity, nutrition, environmental health, breast cancer, HPV and cervical cancer. Much effort is focused on developing culturally sensitive cancer education materials and interventions—meaning they are targeted to address informational needs that specific minority and underserved groups might have.
Since her arrival at Georgetown, Wallington has had four HPV studies funded by federal and advocacy organizations. Grants include a National Institutes of Health (NIH)/National Cancer Institute (NCI) Career Award, Junior Investigator Award from the Robert Wood Johnson Foundation, American Cancer Society Young Investigator Award, and the D.C. Cancer Consortium Community Award.
Wallington’s recent award from the NIH/NCI funds a five-year study designed to increase knowledge awareness about HPV and the HPV vaccine among black mothers, assess the factors associated with mothers’ acceptability or non-acceptability of the HPV vaccine for their daughters, and foster improved informed decision-making.
Testing intervention with randomization
The only way to effectively accomplish these proposed goals, she believes, is to conduct a randomized controlled trial, considered to be the “gold standard” for intervention studies. The study will target black mothers who have daughters between the ages of 9 and 17 not vaccinated against HPV. The mothers will be randomized into either an education intervention or a control group (usual information). The education intervention group consists of four face-to-face HPV educational sessions supplemented with culturally tailored HPV materials adapted from two CDC-tested HPV educational tools. The control group will receive the standard educational material (i.e. flyers, brochures) now available from the CDC.
Wallington’s research, funded by the Robert Wood Johnson Foundation, is a collaboration with Lawrence O. Gostin, Georgetown University Law Center and the O’Neill Institute for National and Global Health Law, to examine HPV-related government mandates and their policy relevancy to whether or not girls are being vaccinated and how. In addition, the grants funded by American Cancer Society and the D.C. Cancer Consortium allow her to study the impact of cell phone text messages as an appropriate form of communication that would increase their understanding—and acceptance—of the HPV vaccine. The research also involves focus groups with black and Hispanic mother-and-daughter pairs, which has already uncovered a plethora of concerns: distrust of the health care system because of bad experience with health providers, literacy and language issues, and stark HPV knowledge gaps, such as belief among both mothers and daughters that HPV is the same thing as HIV, the virus that causes AIDS.
Wallington believes that her current research with adolescent girls also helps to pave the way for additional HPV research with adolescent males. “In all my work with parents and adolescent girls, they say, ‘What about the boys?’” Wallington says.
She now has plans to expand her research focus to better understand the HPV knowledge attitudes and behaviors among adolescent males.
This research will be particularly relevant following the recent CDC’s recommendation that boys be vaccinated against HPV. Wallington says vaccination of boys is critically needed to help prevent males from infecting their partners with HPV, which will have the added benefit of assisting with the declining cervical cancer rates and prevention of other cancers, she says.
By Renee Twombly, GUMC Communications