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Changing Minds, Saving Lives through Breast Cancer Research

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Posted: 10/7/2009

October, Breast Cancer Awareness Month, reminds women that this cancer is one of the top two cancer killers of women of all races and ethnicities in the U.S.   But for a group of nurse researchers at the Johns Hopkins University School of Nursing (JHUSON) and clinical nurses at the Johns Hopkins Hospital (JHH) Avon Foundation Breast Center, breast cancer is a central concern of every month. Working in laboratories and clinics in communities around the corner and around the world, they're battling for women's lives every day.

Reaching Out to Improve Breast Cancer Awareness, Engagement
Regular screening mammograms -- as recommended by the American Cancer Society -- are known to be effective in reducing breast cancer deaths, but many women don't get screened regularly or at all, particularly Asian American women. They are among the least likely to get a mammogram compared to women of all other racial and ethnic groups. JHUSON associate professor Haera Han, PhD, RN, and nursing doctoral candidate JingJing Shang, MSN, RN, OCN, are working to change those statistics.  Both are pushing back against growing rates of breast cancer among Korean American and Chinese American women and breaking new ground in community-based, participatory research to identify and overcome barriers to breast cancer screening for these women.

Han's research has disclosed that the Korean American community does not widely use preventive health services like mammograms.  One-third of women in her study had never heard of a mammogram. The reasons: cultural beliefs that emphasize urgent care, not preventive care; fatalism; limited English; a dauntingly complex health care system; and a lack of health insurance. Han notes, "With long work days without weekend or holiday breaks, a lack of health insurance, and limited English skills, mammograms simply aren't a high priority." To help change that equation, her National Institutes of Health-supported work is developing and testing tailored health messages to help Korean American women understand the benefits of breast cancer screening. Han says, "Our message, based in the traditional Korean role of the woman as a family's center, is simple: 'Take care of yourself; if your health suffers, your family suffers, too.'  And women are starting to hear and heed the message." Her broader goal is to build health literacy skills that can give Korean American women the skills needed to negotiate the health system, to communicate with their health care providers, and to understand that prevention and screening work.
 
In one of the first studies of its kind, Shang, who lost a family member to breast cancer, has found similar reasons underlying the reluctance among Chinese American women to be screened for breast cancer: cultural and language barriers, discomfort with the Western medicine, cost and fear, among others.  Her goal now is to design and test specific ways to motivate older Chinese American women to get screened for breast cancer, beginning in Philadelphia's Chinatown. Shang says, "Preventive health care, like breast screening, helps women gain control over their environment in a way they may never have experienced. And in helping to achieve that change, we can demonstrate for all women that prevention works and that screening can save lives." 

Distress and Coping with Recurrent Breast Cancer
Women can and do recover from breast cancer, but, despite the best treatments, the disease can recur, sometimes many years later. Recurrence, a constant worry, can be a crushing diagnosis for a woman to hear. And treatment may be complex and accompanied by difficult physical symptoms, anxiety, and depression, all with a profound effect on the quality of life. Yet, until JHUSON professor Fannie Gaston-Johansson, PhD, RN, FAAN, and her team of Swedish post-doctoral students Maria Browall, PhD, RN and Elisabeth Kenne-Sarenmalm, PhD, RN began their research, little was understood about either the causes of or the best ways to reduce this often debilitating distress. As director of the JHUSON international and interdisciplinary Minority Global Health Disparities Research Training Program and co-director of a post-doctoral training program in breast cancer research, Gaston-Johansson has led this research team for a number of years, both in the U.S. and Sweden. Their work, focused on Swedish women with recurrent breast cancer, found that while physical symptoms like nausea and fatigue are most common, emotional issues (e.g., fear, depression) were far more disturbing when they arose. Both types of distress adversely affect quality of life. "While conducted in Sweden, our findings have universal application for nursing practice," suggests Gaston-Johansson. "Attending to all of the distressing symptoms in recurrent breast cancer, paying attention to the whole woman, something at which nurses excel, can help improve the overall quality of life and survival potential for these women."

Guiding the Breast Cancer Journey:  The Nursing Touch
The same fear and anxiety that keep some women from getting screening mammograms altogether accompany just about every woman who crosses the threshold of a screening center, whether a new or returning patient. The nurses at the Johns Hopkins Avon Foundation Breast Center, meet that anxiety head on at the door, starting with the programs administrative director for the past dozen years, Lillie Shockney, MAS, BS, RN. A nurse and two-time breast cancer survivor, Shockney is frequently described as a woman on a mission, a mentor and a hero to hundreds of other breast cancer survivors. She recognized from her personal experience with the disease that improved attention to patient support and education could help cut through the fear of screening and the greater fear of a breast cancer diagnosis. She has seen to it that the human touch is felt beginning with the screening process itself.  In contrast to most programs, women who get screened for breast cancer at the Center don't wait days to learn the outcome by phone or letter. Rather, they get the results before they leave and, if necessary, further diagnostic evaluation is immediately performed. No calls. No postcards in the mail. Similarly, if a woman comes to the clinic with a breast symptom -- anything signaling a possible abnormality -- assessment takes place within 24 hours. And, if a finding points toward breast cancer, Shockney or her colleague Deborah Stewart, BSN (also a nurse and two-time survivor) are there to provide medical information while wearing the badge of survivorship. Not only do they meet with each newly diagnosed woman, numbering 800 this year, but they also act as a support team, available to each woman throughout her treatment and follow-up to help make the experience as trauma-free physically and emotionally as possible. A group of 48 volunteers, also breast cancer survivors, are there, too, accompanying women having biopsies, serving as sisters for one-on-one support and models of survivorship. The aim is to ensure that each patient becomes educated, empowered, and engaged in their care. "No one is immune. Breast cancer can affect anyone," Shockney says. "That's why my message to women of all ages is 'early detection, early detection, early detection.' The sooner a woman is diagnosed, the better her chances. And, today, over 85% of women diagnosed with breast cancer will be long-term survivors like me. Getting that message to women is crucial and being there with her on the journey is, too."