Development of decision-support intervention for Black women with breast cancer (original) (raw)
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Journal of Cancer Education, 2013
Background-Despite an overall decline in mortality, breast cancer is the most commonly diagnosed cancer and the second most common cause of cancer death among African American women. As such, clinicians should prepare to address the unique sociocultural and psychological concerns encountered by African American women breast cancer survivors. Objective-To examine, using qualitative methods, the main coping facilitators used by African American women as they transition across the cancer continuum. The identification of these facilitators was then aligned with culturally sensitive interventions most useful with women coping with cancer, along the cancer continuum. Methods-This was a secondary analysis of 20 video-taped stories of African American breast cancer survivors collected as a part of the Washington University Center for Excellence in Cancer Communications project. The interview began with a discussion of how the survivor first became aware she had breast cancer, followed by a series of open-ended probes used to explore the following themes: coping, relationships, health care system experiences, follow up care, and quality of life living with breast cancer. Results-Survivors discussed their experiences and advice for targeting needs at each cancer stage, from screening to diagnosis, treatment, and then survivorship. Survivor narratives point to key evidence-based clinical intervention strategies at each stage of the cancer trajectory. Conclusion-This study found that survivors see a cyclical cancer course, whereby African American breast cancer survivors serve an important role in the lives of unscreened women, newly diagnosed women, and women in treatment.
Psycho-Oncology, 2004
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. selfsacrifice). 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
The Unmet Needs of African American Women with Breast Cancer
Advances in Breast Cancer Research, 2012
Breast cancer is the most common cancer in women and treatment includes various combinations of surgery, chemotherapy, and/or hormone therapy. The multimodal treatment of breast cancer improves survival outcomes, but it also contributes to a prolonged period of medical intervention with associated physical and emotional consequences. However, we know less about the specific clinical experiences of African American (AA) women during treatment for breast cancer and in survivorship. The studies that have addressed the issue of breast cancer in AA women have focused primarily on early detection and epidemiological variables such a screening, mortality and staging at diagnosis. In our study, in-depth semi-structured phone interviews were conducted to explore the clinical experiences, concerns and needs of AA women who had survived breast cancer. The AA women reported that their physicians did not provide adequate disease and treatment information; did not discuss clinical trials with them; and did not offer access to support services.
Journal of General Internal Medicine, 2009
While breast cancer mortality has declined in recent years, the mortality gap between African-American and white women continues to grow. Current strategies to reduce this disparity focus on logistical and information needs, but contextual factors, such as concerns about racism and treatment side effects, may also represent significant barriers to improved outcomes. To characterize perceptions of breast cancer treatment among African-American women and men. A qualitative study of African-American adults using focus group interviews. Two hundred eighty women and 165 men who live in one of 15 contiguous neighborhoods on Chicago's South Side. Transcripts were systematically analyzed using qualitative techniques to identify emergent themes related to breast cancer treatment. The concerns expressed most frequently were mistrust of the medical establishment and federal government, the effect of racism and lack of health insurance on quality of care, the impact of treatment on intimate relationships, and the negative effects of surgery, radiation therapy, and chemotherapy. In addition to providing logistical and information support, strategies to reduce the breast cancer mortality gap should also address contextual factors important to quality of care. Specific interventions are discussed, including strategies to enhance trust, reduce race-related treatment differences, minimize the impact of treatment on intimate relationships, and reduce negative perceptions of breast cancer surgery, radiation therapy, and chemotherapy.
European Journal of Cancer Care, 2019
Objective: Despite advancements in cancer treatment, racial disparities in breast cancer survival persist, with African American women experiencing lower survival rates and poorer quality of life than non-Hispanic White women. Using a social cognitive model of restorative well-being as a framework, this qualitative study sought: (a) to examine strength-and culture-related factors associated with African American female breast cancer survivors' cancer coping and post-treatment experiences and (b) to make recommendations for culturally sensitive intervention. Methods: Eight focus groups occurred with a total of 40 local African American breast cancer survivors. Focus groups were audiotaped and transcribed verbatim. Framework analyses were used to identify themes. NVivo qualitative analysis software-managed data. Results: Two major themes emerged from the focus group discussions: (a) God enables breast cancer survivorship and works every day in our lives and (b) the healthiest thing about us is that we are strong African American women. Recommendations for intervention planning and implementation were made towards intervention structure, content development and language framing in a local context. Conclusion: Findings suggest a need for community-based participatory survivorship interventions that are culturally and spiritually consonant and peer-based. Such interventions may respond to the cancer-related and personal needs of the target population.
Understanding Supportive Care Factors Among African American Breast Cancer Survivors
Journal of transcultural nursing : official journal of the Transcultural Nursing Society, 2016
Comprehensive breast cancer care includes not only diagnosis, staging, and treatment of cancer but also assessment and management of the physical, psychological, social, and informational needs, collectively known as supportive care. Several studies have documented the importance of addressing supportive care factors among breast cancer survivors. However, there appears to be a paucity of research concerning African American breast cancer survivors (AABCS). Therefore, the purpose of this study was to describe and understand the patient-centered supportive care factors among self-identified AABCS. Using a qualitative descriptive approach, an open-ended question explored supportive care factors that were used by N = 155 AABCS. Four supportive care factors were identified: faith, supportive structures, optimism, and access to information. An understanding of these factors might facilitate discussion between survivors and the health care team. The resultant effect could also inform and ...
Psycho-Oncology, 2019
ObjectiveSocial support is a critical component of breast cancer care and is associated with clinical and quality of life outcomes. Significant health disparities exist between Black and White women with breast cancer. Our study used qualitative methods to explore the social support needs of Black and White women with hormone receptor‐positive breast cancer on adjuvant endocrine therapy (AET).MethodsWe conducted four focus group (FG) interviews (N = 28), stratified by race (ie, Black and White) and time on AET. FGs were audiotaped, transcribed, and analyzed according to conventions of thematic analysis.ResultsParticipants noted the importance of having their informational and emotional social support needs met by friends and family members. White participants reported support provided by others with breast cancer was crucial; Black women did not discuss other survivors as part of their networks. Notably, both White and Black participants used the FG environment to provide experienti...
Oncology Nursing Forum, 2008
To investigate patient-physician communication from the patient's perspective about guidelines and sources of information used in developing survivorship care and preferred avenues for information delivery to African American breast cancer survivors. Design: Qualitative. Setting: Medical centers in the eastern United States. Sample: 39 African American breast cancer survivors with a mean age of 55. Methods: Each participant contributed to one of four two-hour focus group discussions and completed brief questionnaires regarding sociodemographic characteristics and cancer-specific data. Focus group topics included involvement in discussions and decision making about survivorship care, specific instructions and information that physicians provided regarding follow-up medical care and preventive health actions, concerns about recurrence and ways to prevent it, and sources of information used to develop survivorship care plans. Main Research Variables: Survivorship care, patient-provider communication, information delivery methods, and African American breast cancer survivors. Findings: Participants reported gaps in the information given to them by physicians about their diagnosis, treatments, side effects, and guidelines for follow-up care. Participants expressed strong interest in self-care practices aimed at reducing their risk of recurrence and receiving evidence-based information and guidelines from healthcare providers. The majority (about 90%) reported physician checkups and mammography screening during the prior year, whereas only 54% reported making daily efforts to improve their health and reduce their risk of recurrence. Although evidence-based guidelines are available to healthcare providers delivering follow-up care to breast cancer survivors, more than 90% of participants in the present study reported a lack of specific recommendations regarding diet or physical activity as ways to improve quality of life and health as a cancer survivor. Conclusions: The present study underscores 2006 findings from the Institute of Medicine that strategies for delivering information and guidance to cancer survivors and coordinating their care remain important issues for patients and their healthcare providers. Implications for Nursing: The present study's findings highlight the need expressed by breast cancer survivors for comprehensive guidance from healthcare providers in developing plans of care that improve patients' quality of life and target recurrence risk. Guidelines are available for dissemination and use in medical settings; however, the guidelines have not been incorporated into standard medical practice for patients with cancer. Information about long-term follow-up care after primary treatment should target the specific needs of survivors from diverse ethnic, socioeconomic, and educational backgrounds to promote understanding of surveillance to detect recurrence, long-term effects of cancer treatments, and general health maintenance. R educing the rates of recurrence and mortality for more than 2.4 million breast cancer survivors in the united states is an important public health goal (ries et al., 2007). A necessary step toward accomplishing this goal involves providing evidence-based information and guidelines for follow-up care to patients with cancer after their primary treatment is complete. However, the mechanisms and context for delivering this information and guidance to patients while coordinating their care remain important issues for patients and physicians. The present study was designed to investigate patient-physician communication related to the delivery issue from the perspectives of African American breast cancer Key Points. .. ➤ African American breast cancer survivors desire comprehensive guidance from healthcare professionals to improve their quality of life and decrease the risk of cancer recurrence.
Integration of Social Determinants in Breast Cancer Treatment for African American Women
2013
African American women within the United States continue to have the highest breast cancer mortality rate despite higher incidence in Caucasian women. This racial disparity is attributed to unaddressed factors such as lower socioeconomic status, lesser utilization of medical services, and lower screening rates. The present study investigates social determinants (socioeconomic status, cultural beliefs and attitudes, psychosocial perceptions, and community/social support) influencing adherence and effectiveness in ongoing treatment. The study utilizes a randomized control trial design with a pre-test/post-test and time series component. A pilot intervention consisting of four phases is assigned to the experimental group in addition to conventional biomedical treatment; the comparison group only receives the latter. Subjects include African American women who are 18 or older, diagnosed with invasive breast cancer within the past six months, and are residing in minority, urban, and socioeconomically disadvantaged areas; sampling is conducted via probability multistage clustering. Health-related quality of life (HR QoL) will be measured through the European Organization for Research and Treatment of Quality of Life Questionnaire (EQRTC QLQ-C30) and the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire. Correlations between type of intervention and the biological stage of breast cancer, HR QoL and survivorship will then be generated. Findings within this report will be integrated into a theoretical social framework aimed towards optimizing cancer care. Nursing implications entail enhancing patient-physician communication, establishing the role of “navigator” from oncology nurses, providing psychosocial assessment and intervention, and encouraging engagement in breast cancer support groups.
Journal of Racial and Ethnic Health Disparities
Background Although rates of death from breast cancer have declined in the USA for both Black and White women since 1990, mortality rates for Black women remain strikingly higher-40% higher compared to White women (American Cancer Society 1). The barriers and challenges that may be triggering unfavorable treatment-related outcomes and diminished treatment adherence among Black women are not well understood. Methods We recruited 25 Black women with breast cancer who were to receive surgery and chemotherapy and/or radiation therapy. Through weekly electronic surveys, we assessed types and severity of challenges across various life domains. Because the participants rarely missed treatments or appointments, we examined the impact of severity of weekly challenges on thoughts of skipping treatment or appointment with their cancer care team using a mixed-effects location scale model. Results Both a higher average severity of challenges and a higher deviation of severity reported across weeks were associated with increased thoughts on skipping treatment or appointment. The correlation between the random location and scale effects was positive; thus, those women that reported more thoughts on skipping a dose of medicine or appointment were also more unpredictable with respect to the severity of challenges reported. Conclusions Black women with breast cancer are impacted by familial, social, work-related, and medical care factors, and these may in turn affect adherence to treatment. Providers are encouraged to actively screen and communicate with patients regarding life challenges and to build networks of support within the medical care team and social community that can help patients successfully complete treatment as planned.