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Developing Culturally Relevant Breast Cancer Resources: Creating Getting Connected: African-Americans Living Beyond Breast Cancer

May 2012

Arin Ahlum Hanson, MPH, CHES, Living Beyond Breast Cancer; Patricia K. Bradley, PhD, RN, Villanova University College of Nursing;   Janine Guglielmino, MA, Living Beyond Breast Cancer

Background

In 1997, in response to a needs assessment of African-American women affected by breast cancer, Living Beyond Breast Cancer developed the educational booklet, Getting Connected: African-Americans Living Beyond Breast Cancer. Due to changes over the last decade in breast cancer treatment, cancer disparities and perceptions of breast cancer, a revision of Getting Connected was undertaken in 2010.

Method

The qualitative, consumer-focused revision process for the 2nd edition of Getting Connected involved three components: 1) A national advisory committee of community leaders and health providers 2) Five focus groups with African-American women (n=44) diagnosed within the last two years and 3) Interviews of eight informants who work closely with African-American women. LBBC worked with community-based organizations to hold focus groups in Philadelphia, Little Rock and Chicago. All groups were audiotaped, transcribed and analyzed for salient themes. Getting Connected was revised and redesigned using “plain language” principals.

Results

The second edition of Getting Connected is a 50-page, plain language, culturally relevant resource designed to be used by African-American breast cancer survivors, their caregivers and their healthcare providers. Published in October 2011, this booklet promotes informed decision-making, while providing support and inspiration. Format changes included size, color and the addition of interactive elements. ‘Staying Connected’ emerged as a new category of connection.

Conclusions

Getting Connected addresses how one can live positively beyond breast cancer through the use of spirituality and reaching out to others. The personal approach of Getting Connected makes it a valuable resource for healthcare providers working with African-American women.

Exhibition

Cancer, Culture and Literacy Conference, May 2012 (oral)

2012 CDC National Cancer Conference, August 2012 (poster)

American Psychosocial Oncology Association, February 2013 (poster)

Oncology Nursing Society Annual Congress, April 2013 (poster)

Association of Oncology Social Workers Annual Conference, June 2013 (oral)

Academy of Oncology Nurse Navigators Annual Conference, November 2013 (poster)

7th Biennial Cancer Survivorship Research Conference, June 2014 (poster)

The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, November 2014 (poster)

Download a PDF of the poster.

Denver, CO  ·  September 13, 2014

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