Access Type

Open Access Dissertation

Date of Award

January 2012

Degree Type

Dissertation

Degree Name

Ph.D.

Department

Nursing

First Advisor

April Vallerand

Abstract

African American patients have been reported as having a greater number of aggressive cancer treatments compared to Caucasians (McWayne & Heiney, 2005; Meeske et al., 2009; Ridner & Dietrich, 2008), and have higher incidence of BCRLE due axillary lymph node dissection (ALND) and radiation intervention (Thomas-MacLean, Miedema, Tateemichi, 2005). Research regarding BCRLE has used BCRLE samples comprised almost exclusively of married and well-educated Caucasian women. Few studies (Bowman, Deimling, Smerglia, Sage, & Kahana, 2003; Eversley et al., 2005; Joslyn, 2002; McWayne & Heiney, 2005) have included sizeable numbers of African American breast cancer survivors. No studies have been found that explicitly investigate the phenomenon of the lived experience of African American women who have acquired BCRLE and those that do include African American women in the sample; have not focused on any potential differences by race. The purpose of this descriptive, phenomenological qualitative study was to explore African American women's experiences in living with breast cancer-related lymphedema (BCRLE) including physical changes, functionality and perception of body image, family and social roles, coping techniques, and patient-healthcare provider relations. The final sample consisted of eleven women whose ages ranged from 50 to 73 years (M= 62, SD= 6.65) (see Table 1). Three participants were between 50 and 60 years old, seven participants were between the ages of 61 and 70 years old, and one participant was between 70 and 80 years old. All interviews were conducted by the principal investigator (PI). Two semi-structured interviews were performed with each participant. A total of twenty interviews were conducted. Five themes emerged from the analysis of the data and included: (1.) Living with Breast Cancer-related Lymphedema: "Sometimes your personal health is your personal business and nobody else's" (2.) Enduring the Unexpected: I'm having this thing the rest of my life!, (3.) Diminished Perceptions of Self Image: "it kinda of uh attacked my self-image, (4.) Diminished Perceptions of Self Image: "it kinda of uh attacked my self-image", and (5.) Distrust of physicians and other healthcare providers: "Just listen to us..." For the women in the current study, the residual effect of `not knowing' had detrimental consequences from the beginning of the BCRLE experience. Ignorance intensified pain and suffering, perpetuated distress and impaired functionality, and created feelings of despair and contributed to social isolation. As revealed from the review of the literature, educational preparedness has an immense effect upon virtually every aspect of the lives of African American women living with BCRLE. Participants in this study conveyed that much of the information received from healthcare providers, contained in brochures and reference books, and displayed on the internet was difficult to understand. Healthcare providers and educators should assess the patient's level of accurately understanding BCRLE. This information should be used to determine alternative methods of effective and appropriate educational techniques, including the development of low literacy formatted reading material. Information is relatively useless if the patients can't understand the information. Knowledge is vital and facilitates positive adaptation of African American women throughout the life-time span of this chronic condition.

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