Little is known about the impact of health related quality of life on the well being of Asian American (AA) breast cancer survivors. This five-year mixed-methods study entitled: Culture, Support and Quality of Life: Asian American Breast Cancer Survivors, proposes to identify and define how culture may modify the definitions of self-integrity and quality of life (QOL) for Asian American (AA) breast cancer (BC) survivors. Each culture defines self-esteem and the proper behavior required to achieve a positive sense of self for its members, and these definitions vary. Differing cultural definitions might explain why few ethnic minorities, like AAs, use mainstream survivorship services. AABC survivors have been reported to suffer significant emotional and social problems, but European American (EA) based mainstream designed services do not seem to adequately meet their needs. Two major barriers may hinder more effective interventions. First, dissonance between the beliefs and values upon which these mainstream services are based and AA constructions of self esteem and rules for relationships may reduce the acceptability of mainstream services. For example, most mainstream services emphasize the integrity of individuality and personhood, and accordingly, address the women alone. Yet, AA culture identifies the family as the unit of analysis, not the individual. This study proposes to utilize a more holistic operationalization of culture as a concept that could establish a new avenue of research to move the science of health disparities research forward. Identification of the salient unmet cultural needs of AA women would potentially expand Western based theories of positive survivorship and provide directions to develop more culturally relevant support services to improve their QOL. Second, no consensus exists on what actually comprises the construct of culture. This study proposes to develop a more holistic conceptual framework. Therefore, our four study aims are to: 1) Characterize how women in each of the four ethnic groups define self-integrity and well-being, 2) Identify if and how ethnic specific support services address the culturally formed expectations of integrity and well-being of AA BC survivors, and how this may differ by ethnic group, 3) Explore how the breast cancer experience impacts family members, and 4) Identify the impact of the cancer experience on the women's quality of life, and if it differs by ethnicity. In-depth ethnographic interviews will be conducted with 180 BC survivors and 96 family members for all 4 Aims. We will also survey 800 BC survivors (200 from each ethnic group), and triangulate the quantitative and qualitative findings to increase the validity of our results. We will use CBPR to collaborate with our community partners, Northern and Southern CA and Houston, TX to conduct the study. The 3 sites will enable us to also assess geographic and within group cultural variations. the quantitative and qualitative findings to increase the validity of our results. We will use CBPR to collaborate with our community partners Northern and Southern CA and Houston, TX to conduct the study. The 3 sites will enable us to also assess geographic and within group variations on cultural beliefs and patterns. The outcomes of this study are likely to inform both the science and practice of survivorship in the Asian American community in particular, and among diverse ethnic populations as well, by illuminating the culturally constructed modes and outcomes for managing the cancer experience. The findings are anticipated to provide direction to better meet the needs of cancer survivors and contribute the to the elimination of health disparities.
Little attention has been paid to the growing cancer control needs of Asian Americans (AAs), the ethnic group with the fastest growing rate of all ethnic groups in the U.S., and will double in size to 25 million by 2050. AA also are experiencing the fast increase in new cancer cases of all ethnic groups. The cancer incidence rate for AAs isis predicted to increase by 132 percent among this diverse population compared with 31 percent for non-Hispanic whites. Currenlty, unlike all other ethnicities, cancer is the number one cause of death for AA men and women. Notably, several AA subgroups currently show rates of cancer, including breast cancer (BC), that are higher than or equal to non-Hispanic white women. For some groups, a greater proportion of women with breast cancer are living through and beyond cancer. Studies show, however, that AABC survivors experience emotional and physical needs that are largely unmet, and despite the growing need and the unnecessary suffering borne by this community, too few studies have been conducted on the needs of AA cancer survivors. Of the 362,238 studies found in a Pub-Med search on cancer survivorship or social support, we found only 65 studies published between 1966 and 2010 that investigate the needs of AAs. Moreover, few support services exist to address the needs of AA cancer survivors in the entire nation. Evaluation of the impact of cancer on the social support needs of AA cancer survivors and their families, and in particular, the health related quality of life (HRQOL) of AA cancer survivorship, remains essentially unexamined. Thus, this is the first study to explore cultural explanations for the cross-cultural differences found in quality of life studies among Asian and Asian American populations compared with Western countries. Our study proposes to investigate both between and within group differences among three Asian-American (AA) subgroups (Chinese-American, Japanese-American, and Vietnamese-American) and a comparison group of European-American (EA) breast cancer (BC) survivors. The majority of studies in cancer survivorship have assumed a universality of the assumptions of positive coping strategies and goals. The differences in the performance of standardized scales noted among Asian Americans have not been explained. Relevance: The paucity of support groups and resources that are culturally salient for the growing number of AAs suffering with cancer makes a compelling public health argument for this innovative, mixed-paradigm and mixed-method study. Moreover, this study will forge a new path to evaluate the validity of the assumptions regarding the universality of Western European-American based values of individualism and autonomy that underlie the types of mainstream support services, and identify how, beyond Asian-language concordance, ethnic specific AA support groups assist their members along the survivorship journey through more familial based values and strategies. Investigation of these two areas would potentially expand the theoretical framework currently applied in HRQOL work with culturally-based modifications that are used in AABC support services so that other AA as well as mainstream health service professionals could better meet the needs of this rapidly growing population of AA cancer survivors and their families. This new path would also more accurately and effectively operationalize culture as a concept and construct to identify more relevant aspects of cultural differences that could move the science of health disparities research forward. We also utilize the strength of the community based participatory research approach to promote the validity of the findings to include the reality of the community.
| Kagawa Singer, M; Dressler, W; George, S et al. (2016) Culture: The missing link in health research. Soc Sci Med 170:237-246 |
