After the Cure: The Untold Stories of Breast Cancer Survivors

Appendix

149 Appendix A LT H O U G H T H I S B O O K is a joint product, the two authors worked independently. Saskia obtained the grant, designed the questionnaire, and led the research team. She then was forced to turn her attention to other projects. Emily thus did the analysis and writing on her own. Because the goal was not to document the existence of symptoms but, rather, to understand how people lived with and made sense of them, Saskia used a qualitative methodology. Her research team included an anthropologist, an oncology nurse, a doctoral candidate in psychology, and a master’s candidate in public health. Breast cancer survivors were eligible if they were at least one year beyond completion of adjuvant radiation and/or chemotherapy (some were continuing with Tamoxifen, a hormonal therapy). Recruitment occurred through the distribution and posting of flyers at a variety of locations, including cancer wellness centers, physicians’ offices, places of worship, prosthetic supply stores, and support-group meeting sites. Respondents to the flyers were prescreened by phone for basic demographic information. Because participants self-nominated, our sample may have been somewhat skewed. Whenever possible, however, we compare our results to those of quantitiave studies. Saskia initially planned to study three groups of women: African Americans, Hispanics, and whites. She had no difficulty recruiting whites and African Americans. The latter group, in particular, was extremely supportive of the endeavor; African American support-group leaders throughout Los Angeles posted the flyers and announced information about the study during their gatherings. All but two of the African American women in this study were interviewed by a fieldworker from Kenya. She developed such an extraordinary rapport with the respondents that many referred friends from their churches, 150 Appendix neighborhoods, or support groups to our project. It is our speculation that beyond the charisma of that fieldworker, the project appealed to African American survivors beacuse it provided them with a venue to voice their dissatisfaction with the health care system. Saskia also hired two half-time, bilingual Latina fieldworkers to recruit Hispanic respondents. All the recruitment materials were translated into Spanish and back-translated for accuracy. In addition to the recruitment venues used for our other respondents, the fieldworkers went into numerous local settings, including neighborhood markets, free clinics, and community hopitals. Nevertheless, no Latina respondent joined our study. One explanation might involve access to health care. Latinas who are poor and/or undocumented may be more likely to seek treatment at later stages; as a result, the posttreatment symptoms might not be considered either unusual or especially troubling. Other explanations may lie in cultural differences. After the fact, a colleague who studies Latino families suggested that we might have had more success if we had tried to recruit the Latinas through their husbands, because women would not participate in a research study without the express consent of their male partners. It also is possible that many Latinas perceived the posttreatment symptoms as simply one more burden to bear or the “will of God.” Nevertheless, we remain convinced that future studies should make every effort to include Latinas as well as Asian populations. Early in the fall of 2002, Saskia conducted four focus groups (two with African Americans and two with whites) to collect preliminary data and help refine the questionnaire. Throughout the following ten months, she and her team conducted in-depth interviews, lasting between one and three hours, with seventy-four women, twenty-two of whom had participated in the focus groups. Questions elicited data about medical background, treatment experience, the nature of posttreatment symptoms, reactions from both medical personnel and friends and family, self-management of symptoms, and evolving perceptions of self. All interviews were recorded, transcribed, and coded. The following tables present demographic information about the seventy-four women: 151 Age N % 30–39 2 2.80 40–49 16 22.54 50–50 30 42.50 60–69 15 21.13 70–79 6 8.45 80–89 2 2.82 Missing 1 Marital Status N % Married 27 38.57 Divorced 22 31.43 Separated 4 5.71 Widowed 7 10.00 Single 7 10.00 Unmarried, living with partner 2 2.86 Other 1 1.43 Missing 2 Number of Children N % 0 14 20.59 1 10 14.71 2 25 36.76 3 12 17.65 4 3 4.41 5 4 5.88 6...