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Access Type

WSU Access

Date of Award

January 2023

Degree Type

Dissertation

Degree Name

Ph.D.

Department

Nursing

First Advisor

April Vallerand

Abstract

The Lived Experience of African American Breast Cancer Survior AdvocatesBackground

African American (AfAm) breast cancer survivor advocates are a unique group of women who have successfully navigated the healthcare system for their own treatment and then went on to advocate for others. Although many beneficial outcomes have resulted from advocacy, there is a lack of concentration on the characteristics of AfAm advocates themselves, and the challenges they face in accomplishing their goals.

Objectives

The purpose of this study was to explore and understand the lived experience of AfAm breast cancer survivor advocates by gaining insight into the experiences, motivations, barriers, and benefits of advocacy participation.

Methods

A qualitative participatory action research approach using photovoice was guided by a phenomenological analysis of inquiry. Individual open-ended interviews were conducted with ten AfAm breast cancer survivors at various stages of cancer survivorship in the Metro Detroit area. Advocates selected photos of their advocacy experiences to discuss and taking an active part in the research collection and analysis process.

Results

Major themes that were identified included motivations, goals, benefits and cultural relevance. For advocates, it was important to share personal stories, educate, support, and make sure the patient voice was heard. Major goals included breast cancer awareness, education, access to care, and fundraising. Benefits included feelings of empowerment, meaning, and new and improved relationships. Cultural support had a major influence and It was critical for advocates to demonstrate that there were resources where AfAm women could feel comfortable and get the support and information they needed.

Conclusion

Advocates who participate at the individual, community or societal level can make an impact for their community and themselves. Advocates benefit by finding purpose, meaning and new relationships through their advocacy activities. Heath care providers and researcher benefit by delivering education and increasing awareness in the community in a culturally relevant manner. Finding more ways to utilize this population of cancer survivors may be a path toward ending health disparities and improving outcomes in breast cancer care.

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