Breast health education for working women in Appalachia: insights from focus group research.

BACKGROUND: This study seeks to understand rural working women, their knowledge of health systems, and how breast health issues fit into their lives. A key aim of this study was to identify regionally and culturally specific factors that influence how these women approach breast health and to identify ways that more positive breast health behaviors can be achieved. METHODS: Five focus groups (N = 42) were conducted among women at sites where the Breast Health Outreach Program (BHOP) had been conducted. Focus groups were composed of 7 to 10 women who were in about the same age cohort. RESULTS: Women provided multiple insights about their attitudes and behaviors related to breast heath concerns. Analysis of the data revealed that many of the comments clustered around two types of "systems" in these women's lives: the professional health care system and personal community systems. The BHOP provides a bridge between these two systems and seems to facilitate positive actions. Workplace health professionals also provide a bridge between professional and personal systems. CONCLUSIONS: Women exhibited the general distrust of the medical system that the literature indicates is often associated with Appalachian culture. However, this study found that distrust can be overcome with education programs that meet women where they live and work. Such programs are most likely to be successful when the materials and methods are sensitive to Appalachian culture and when medical services are brought into the community.     

Understanding the breast cancer experience of Asian American women

Breast cancer is the most common form of cancer in women and affects women across all ethnic groups. Although the psychosocial impact of breast cancer is being studied, there is little information on ethnic minorities.To better understand the breast cancer experience of Asian American women, we conducted key informant and focus group interviews. Six professionals participated in the key informant interviews. A total of 34 Asian American breast cancer survivors participated in focus group interviews, including Korean (n=10), Chinese (n=11), and a mixed Asian group (n=13). The common themes identified in this series of qualitative studies included: lack of knowledge about breast cancer; medical care issues such as cost and amount of time spent with physician; cultural factors related to beliefs about illness, gender role and family obligations (e.g. self-sacrifice) and language barriers; the importance of spirituality; and psychosocial concerns related to worry about children, burdening the family, body image and sexual health concerns. A primary source of support and coping for Asian American women with breast cancer was their spiritual beliefs. The results from this qualitative study have been used to prepare a survey instrument to examine these issues in a larger sample of Asian American women.     

“Being connected” The experience of African American women with breast cancer: A community-based participatory research project: Part I

The objective was to understand the breast cancer experience of African American (AA) women using a community-based participatory research framework. Qualitative data were collected from five focus groups with 29 participants in four urban cities. “Being Connected” was the major theme that explained the importance of people in their lives as they coped with the diagnosis, treatment, and life after therapy. Faith, talking, information, support, and living with changes were important factors in the process. The breast cancer experience was situated with the AA culture and community and unique aspects were identified for clinical practice in the care of these women.     

Breast cancer screening and African American women: fear, fatalism, and silence

PURPOSE/OBJECTIVES: To explore the beliefs, attitudes, and practices related to breast cancer and breast cancer screening among low- and middle-income African American women. DESIGN: Qualitative study using focus group methodology. SAMPLE/SETTING: 26 African American women, age 40-65, selected from three employment groups, recruited from a community-based center and a local teacher's union in a moderate-sized urban area. METHODS: Three 90-minute focus group discussions exploring breast cancer beliefs, attitudes, and practices were audiotaped, transcribed verbatim, and analyzed using thematic context analysis techniques. FINDINGS: When breast cancer was discussed, fear was the predominant feeling expressed in all groups. This fear was a primary reason not to engage in breast cancer screening. Unemployed women and service workers emphasized the role of violence in causing breast cancer, whereas teachers discussed injury and sex as causing breast cancer. All participants stressed that breast cancer is seldom discussed within the African American community. Teachers added that this secrecy within the African American community leads to breast cancer being viewed as a white woman's disease. CONCLUSIONS: Despite initiatives promoting breast cancer awareness. African American women still hold misconceptions regarding the etiology of breast cancer and fatalistic perspectives regarding breast cancer outcomes, perhaps because breast cancer is discussed infrequently. Because pain, fear, and fatalism were discussed in all groups, future research should address the influence of these factors to increase screening behaviors. IMPLICATIONS FOR NURSING PRACTICE: Because unemployed women, service workers, and teachers differed in their beliefs about breast cancer and breast cancer screening, nurses must be mindful of the need to tailor Interventions to address the needs of both low- and middle-income African American women.     

Treatment regimen,sexual attractiveness concerns and psychological adjustment among African American breast cancer patients

BACKGROUND: Among a sample of African American women recently diagnosed with breast cancer, we assessed the consequences of different treatment regimens on sexual attractiveness concerns, and the impact of sexual attractiveness concerns on current and subsequent psychological adjustment. PATIENTS AND METHODS: The sample included 91 African American women with breast cancer; 90% had Stage I or II disease, 48% had chemotherapy, 47% had a lumpectomy, and 53% received a mastectomy. Feelings of sexual attractiveness and psychological adjustment were assessed an average of 3 months following surgery and again 4 months post-baseline. RESULTS: Regression analyses revealed that chemotherapy was associated with greater concerns about sexual attractiveness among lumpectomy patients (p<0.05), but not among mastectomy patients (p>0.20). The interaction also suggested that chemotherapy equalized the impact of types of surgery, as there was no difference on sexual attractiveness between surgery groups among women who had received chemotherapy (p>0.20). However, among women who had not received chemotherapy, mastectomy patients reported greater sexual attractiveness concerns (p<0.01). Finally, regression analyses revealed that feelings of sexual attractiveness were an important component of psychological well-being, both cross-sectionally (p<0.001) and longitudinally (p<0.001). CONCLUSION: Assessment of the combined impact of different treatment regimens on feelings of sexual attractiveness is particularly important given the current consensus that all breast cancer patients should receive chemotherapy, regardless of nodal status. Further, concerns about sexual attractiveness should be considered for inclusion as one component of psychosocial support programs for African American women with breast cancer, as our results suggested that they played a significant role in psychological adjustment.     

Ethnic differences in risk perception among women at increased risk for breast cancer

Summary There has been increasing interest in the role of cultural and ethnic factors in breast cancer risk perceptions and screening practices. This study examined ethnic differences in breast cancer risk perception in 112 African American and 224 white women ages 35 and older who had at least one first-degree relative diagnosed with breast cancer. These samples were matched for education and age. Data on breast cancer risk factors, risk perceptions, breast cancer worries, and breast cancer screening practices were collected through structured telephone interviews. The results show that African American women were significantly less likely than white women to report heightened perceptions of personal risk after their relative was diagnosed with breast cancer (61% vs 82%; p<.001). Despite this, African American women had significantly greater concerns about their personal risk of breast cancer and worries about their affected relative. African American women also scored significantly higher than white women on a measure of avoidance of breast cancer-related thoughts and feelings. These psychological variables were associated independently with breast cancer risk perception in multivariate models, taking precedence over demographic and risk factor predictors. Observed ethnic differences in breast cancer risk perceptions and psychological distress may be attributable to the influence of cultural factors particular to people of African descent, such as the importance of interpersonal relationships, spirituality, and time orientation. An Africentric perspective is used to interpret these findings and to provide suggestions for delivering effective breast cancer risk counseling to African American women.     

Perceptions of changes in weight among African American breast cancer survivors

BACK GROUND: Although African American breast cancer survivors are most likely to gain weight following diagnosis and treatment compared to women from other ethnic groups, limited information is available on psychological and behavioral reactions to weight change in this population. OBJECTIVES: To explore perceptions and reactions to weight change in African American breast cancer survivors. METHODOLOGY: A parallel mixed methods approach was used to explore experiences with and reactions to weight change following breast cancer diagnosis and treatment. Participants were 16 short- and long-term African American breast cancer survivors. RESULTS: Nine out of 16 participants gained weight following diagnosis and treatment and most participants were concerned about these changes. Most participants were also interested in diet and exercise programs; however, a holistic and common sense approach to diet and physical activity emerged as key themes. CONCLUSIONS: Although prior reports have found that African American women in the general population report a greater tolerance for larger body sizes, most participants in this study were concerned about changes in their weight and were actively trying to minimize weight gain. Several themes emerged regarding physical activity and dietary behaviors; overall, participants described a holistic and practical approach to these behaviors.     

'I'm living with a chronic illness, not . . . dying with cancer': a qualitative study of Australian women's self-identified concerns and needs following primary treatment for breast cancer

This study aimed to identify the current concerns and needs of Australian women who had recently completed primary treatment for breast cancer in order to develop a workbook-journal for this population. Focus groups were utilized to allow women to use their own frames of reference, and to identify and verbalize the topics that were important to them following treatment. All focus groups were conducted in a patient education and relaxation room, familiar to the women to assist them to feel more at ease. Ten women aged 36–68 years who had recently completed treatment for early-stage breast cancer at a South Australian public hospital took part in one of three focus groups. Topics covered included current physical, emotional and social needs. Participants reported a sense of apprehension about the future at the completion of primary treatment. In addition to this, five specific areas of concern were identified including physical sequelae of treatment, intimacy issues, fear of recurrence, benefit finding, and optimism versus pessimism about the future. Means of addressing post-treatment concerns were also discussed. Following the presentation of these findings, suggestions to aid health-care professionals in their clinical practice are provided.     

Experiences of Turkish Women with Breast Cancer During the Treatment Process and Facilitating Coping Factors

Background: Breast cancer is the most common type of cancer among women in Turkey and around theworld. Treatment adversely affects women’s physical, psychological, and social conditions. The purpose of thisstudy was to identify the experiences of Turkish women with breast cancer and the facilitating coping factorswhen they receive chemotherapy. Methods: A phenomenological approach was used to explain the experiencesand facilitating factors of breast cancer patients during the treatment period. Data were collected throughindividual semi-structured interviews. The sample comprised 11 women with breast cancer receiving treatment.Results: At the end of the interviews conducted with women with breast cancer, two main themes were identified:adjustment and facilitating coping factors. The adjustment main theme had two sub-themes: strains and coping.Women with breast cancer suffer physical and psychological strains as well as stress related to social and healthsystems. While coping with these situations, they receive social support, turn to spirituality and make new sensesof their lives. The facilitating coping factors main theme had four sub-themes: social support, disease-relatedfactors, treatment-related factors and relationships with nurses. It has been determined that women receivinggood social support, having undergone preventive breast surgery and/or getting attention and affection fromnurses can cope with breast cancer more easily. Conclusions: Women with breast cancer have difficulty in allareas of their lives in the course of the disease and during the treatment process. Therefore, nurses should provideholistic care, teaching patients how to cope with the new situation and supporting them spiritually. Since familysupport is very important in Turkish culture, patients’ relatives should be informed and supported at every stageof the treatment.     

‘We are survivors too’: African‐American youths' experiences of coping with parental breast cancer

Objective: To explore how African‐American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programs. Methods: Three qualitative focus groups which were part of a larger study were conducted with 12 African‐American youth between the ages of 11 and 18, currently coping with parental breast cancer from the Northeastern part of the United States. Interviews were audio‐taped and transcribed verbatim, and analyzed using content analysis. Results: African‐American youth described fear and uncertainty about the mortality of their parent, their unpredictable future, and discomfort in negotiating breast cancer's relationship with the entire family. Four primary themes emerged which were coping with cancer, it affects us too, changes in family functioning, and growth through pain. African‐American youth described feeling overlooked by their families and oncology staff treating their parents, often being in the role of protecting their parents physically and emotionally. Conclusions: This study suggests that clinicians can improve the care of African‐American breast cancer patients and their adolescent children by being more family‐centered. Adolescents need more developmentally appropriate preparation for the family changes likely to occur when a parent is diagnosed and treated for breast cancer. Developing a support group comprised of other youth coping with parental breast cancer from diagnosis throughout treatment was described as a preferred intervention to promote a shared understanding in order to overcome feelings of isolation, worry, and fear. Copyright © 2010 John Wiley & Sons, Ltd.     

Psychosocial concerns of young African American breast cancer survivors

Thirty-three African American breast cancer survivors age 45 or younger participated in semistructured phone interviews about psychosocial concerns. Twenty-six percent believed treatment interfered with employment. One third wanted additional emotional support at and after diagnosis. One half felt cancer negatively influenced romantic relationships. Forty-five percent wanted children at diagnosis, but one half these women never received fertility information. One third reported sexual problems, but 73% never discussed sexuality with providers. Fifty-two percent lacked information about cancer-related sexual dysfunction. The strength and spirituality of African American women may facilitate cancer adjustment, but cultural taboos surrounding women's health issues may interfere with successful coping.     

Brief report: etiological attributions for breast cancer among healthy African American and European American women

Anecdotal evidence suggests that African American women's attributions about breast cancer may differ from European American women, but empirical studies are lacking. The present study examined attributions about breast cancer made by a sample of healthy African American and European American women. The sample included 197 women (75 African American, 122 European American), with a mean age of 39.2. Overall, women were most likely to attribute the development of breast cancer to genetics, "no one", environmental poisons, diet, personal behavior and stress. European American women were more likely to attribute breast cancer to broadly external causes such as the environment, heredity and chance, while African American women were more likely to list immediate, interpersonal-level causes such as a blow to the breast, and personal behavior. Results highlight the need for attention to cultural processes in cancer prevention and control.     

Racial disparities in breast cancer mortality in a multiethnic cohort in the Southeast

BACKGROUND:

Although much has been done to examine those factors associated with higher mortality among African American women, there is a paucity of literature that examines disparities among rural African Americans in South Carolina. The purpose of this investigation was to examine the association of race and mortality among breast cancer patients in a large cohort residing in South Carolina for which treatment regimens are standardized for all patients.

METHODS:

Subjects included 1209 women diagnosed with breast cancer between 2000 and 2002 at a large, local hospital containing a comprehensive breast center. Kaplan‐Meier survival curves were calculated to determine survival rates among African American and European American women, stratified by disease stage or other prognostic characteristics. Adjusting for various characteristics, Cox multivariate survival models were used to estimate the hazard ratio (HR).

RESULTS:

The 5‐year overall all‐cause mortality survival proportion was ～78% for African American women and ～89% for European American women, P < 0.01. In analyses of subpopulations of women with identical disease characteristics, African American women had significantly higher mortality than European American women for the same type of breast cancer disease. In multivariate models, African American women had significantly higher mortality than European American women for both breast cancer‐specific death (HR, 2.41; 95% confidence interval [CI], 1.21‐4.79) and all‐cause mortality (HR, 1.42; 95% CI, 1.06‐1.89).

CONCLUSIONS:

African American women residing in rural South Carolina had lower survival for breast cancer even after adjustment for disease‐related prognostic characteristics. These findings support health interventions among African American breast cancer patients aimed at tertiary prevention strategies or further down‐staging of disease at diagnosis. Cancer 2011. © 2011 American Cancer Society.     

Health Volunteerism and Improved Cancer Health for Latina and African American Women and Their Social Networks: Potential Mechanisms

Health volunteerism has been associated with positive health outcomes for volunteers and the communities they serve. This work suggests that there may be an added value to providing underserved populations with information and skills to be agents of change. The current study is a first step toward testing this hypothesis. The purpose is to identify how volunteerism may result in improved cancer health among Latina and African American women volunteers. A purposive sample of 40 Latina and African American female adults who had participated in cancer volunteerism in the past 5 years was recruited by community advocates and flyers distributed throughout community venues in San Diego, CA. This qualitative study included semi-structured focus groups. Participants indicated that volunteerism not only improved their health but also the health of their family and friends. Such perceptions aligned with the high rates of self-report lifetime cancer screening rates among age-eligible patients (e.g., 83–93 % breast; 90–93 % cervical; 79–92 % colorectal). Identified mechanisms included exposure to evidence-based information, health-protective social norms and support, and pressure to be a healthy role model. Our findings suggest that train-the-trainer and volunteer-driven interventions may have unintended health-protective effects for participating staff, especially Latina and African American women.     

Understanding the breast cancer experience of women: a qualitative study of African American, Asian American, Latina and Caucasian cancer survivors

Breast cancer is the most common form of cancer in American women across most ethnic groups. Although the psychosocial impact of breast cancer is being studied, there is little information on women from diverse ethnic and socioeconomic backgrounds. We conducted a qualitative study with breast cancer survivors (BCS) of various ethnicities. A total of 102 BCS participated in focus group interviews (24 African Americans, 34 Asians, 26 Latinas and 18 Caucasians); 20 health professionals participated in key informant interviews. Important ethnic differences in type of treatment were noted, Asians and Latinas were more likely to receive mastectomies and African American BCS were least likely to receive adjuvant therapies, including radiation and chemotherapy. These BCS enjoyed a fairly good overall health-related quality of life (HRQOL) with some persistent concerns. The prevailing concerns among all women included overall health, moderate physical concerns, cancer recurrence or metastases, psychosocial concerns related to worry about children and burdening the family, and body image and sexual health concerns. Additional challenges included: lack of knowledge about breast cancer; medical care issues such as insurance, cost and amount of time spent with physician; cultural sensitivity of providers, language barriers, cultural factors related to beliefs about illness, gender role and family obligations (e.g. self-sacrifice). These BCS, particularly the women of color, voiced that their spiritual beliefs and practices are central to their coping. This study accomplishes two goals; it adds to the sparse literature concerning the psychosocial sequelae of breast cancer among women of color, and it increases our knowledge of specific cultural influences (e.g. dietary practices, coping) and socio-ecological factors on HRQOL. More importantly, the study addressed areas that have not been studied before, specifically, an in-depth study on BCS QOL comparing multiple ethnic groups in the US. The results of this investigation will provide preliminary information to survivors and health-care providers about the impact of culture and socio-ecological contexts on survivorship. Among women of all major ethnic groups, breast cancer is the most common form of cancer and the second leading cause of cancer death (American Cancer Society (ACS), 2002). In 2002, over 203,000 women in the United States will be diagnosed with breast cancer (ACS, 2002). Ethnic disparities exist for cancer stage, diagnosis, survival, morbidity and mortality. In general, ethnic minority women are diagnosed with more advanced disease and experience greater morbidity and mortality (Haynes & Smedley, 1999; Miller et al., 1996; Ries et al., 2000; Shinagawa, 2000). In general, increases in survival rates have prompted greater interest in the quality of life (QOL) of breast cancer survivors (BCS) over the past two decades. Additionally, the QOL of cancer survivors from diverse ethnic, cultural and socioeconomic backgrounds is an emerging priority area for studies on survivorship research and clinical care (Haynes and Smedley, 1999; National Cancer Institute (NCI), 2002; President's Cancer Panel, 2000).     

Racial/ethnic differences in adequacy of information and support for women with breast cancer

BACKGROUND: Providing breast cancer patients with needed information and support is an essential component of quality care. This study investigated racial/ethnic variations in the information received and in the availability of peer support. METHODS: In total, 1766 women who were diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results registry from June 2005 to May 2006 were mailed a survey after initial treatment. Among accrued cases, 96.2% met eligibility criteria (n = 1698), and 72% completed the survey. Race/ethnicity categories were white, African American, and Latinas (2 categories indicating low or high acculturation, which was determined by using the Short Acculturation Scale for Hispanics). Outcomes included receipt and need for treatment-related and survivorship-related information, difficulty understanding information, and support from women with breast cancer. RESULTS: More women reported receiving treatment-related information than survivorship-related information. After adjusting for sociodemographic, clinical, and treatment factors, a higher percentage of low acculturated Latina women desired more information on treatment-related and survivorship-related issues (P < .001). Significantly more Latina low acculturated women than white women reported difficulty understanding written materials, with 74.5% requiring help from others. A higher percentage of all minority groups compared with whites reported no contact with other women with breast cancer (P < .05) and reported less contact through family/friends (P < .05). Women rated the benefit of talking to other women high, particularly with emotional issues. CONCLUSIONS: Continued efforts to provide culturally appropriate information and support needs to women with breast cancer are necessary to achieve quality care. Latinas with low acculturation reported more unmet information and care support needs than women in other racial/ethnic groups.     

Disparities in medical care among commercially insured patients with newly diagnosed breast cancer

BACKGROUND:

African‐American women have increased breast cancer mortality compared with white women. Diagnostic and treatment gaps may contribute to this disparity.

METHODS:

In this retrospective, longitudinal cohort study, Southern US health plan claims data and linked medical charts were used to identify racial disparities in the diagnoses, treatment, and mortality of commercially insured women with newly diagnosed breast cancer. White women (n = 476) and African‐American women (n = 99) with newly diagnosed breast cancer were identified by breast cancer claims codes (International Classification of Diseases, Ninth Revision, Clinical Modification codes 174, 233.0, 238.3, and 239.3) between January 2000 and December 2004. Race, diagnoses (breast cancer stage, estrogen/progesterone receptor [ER/PR]‐positive status), treatment (breast‐conserving surgery, antiestrogen therapy, and chemotherapy interruption or reduction), and all‐cause mortality were assessed from medical charts. Multivariate regression analyses were adjusted for age, geography, and socioeconomic status to test the association of race with diagnoses/treatment.

RESULTS:

White women were older (P < .001) and had higher rates of diagnosis at stage 0/I (55.2% vs 38.4%; P < .05) than African‐American women. More white women had positive ER/PR status (75% vs 56% African‐American; P = .001) and received antiestrogen therapy if they were positive (37.2% vs 27.3% African‐American; P < .001). White women received slightly more breast‐conserving surgery and chemotherapy dose modification than African‐American women (P value nonsignificant). African‐American women had a higher mortality rate (8.1%) than white women (3.6%; P = .06). In adjusted analyses, African‐American women were diagnosed at later stages (odds ratio, 1.71; P = .02), and white women received more antiestrogen therapy (odds ratio, 2.1; P = .03).

CONCLUSIONS:

Disparities in medical care among patients with newly diagnosed breast cancer were evident between African‐American women and white women despite health plan insurance coverage. Interventions that address the gaps identified are needed. Cancer 2010. © 2010 American Cancer Society.