South Asian Women with Breast Cancer: What are Their Needs?
|Institution:||University of California, Los Angeles|
Zul Surani , B.S. -
Beth Glenn , Ph.D. -
Roshan Bastani , Ph.D. -
|Award Cycle:||2005 (Cycle 11)||Grant #: 11AB-1400||Award: $112,214|
|Award Type:||CRC Pilot Award|
|Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side|
Initial Award Abstract (2005)
Increasing numbers of South Asian women are diagnosed with breast cancer each year; however, no previous studies have assessed the psychosocial and practical needs of this growing population. Consequently, few culturally appropriate, in-language services are available to assist them. South Asians are the third largest Asian group in the US and California has the largest population of South Asians of any state. Previous research has demonstrated that one size does not fit all when it comes to approaching ethnic minority communities. Given the uniqueness of this population it is likely that they have distinct needs and would benefit from a tailored intervention. This pilot study will assess the needs of South Asian women with breast cancer and outline the essential components of an intervention to meet these needs. A needs assessment study is usually not designed for hypothesis testing, but rather for discovery of relationships and for hypothesis generation. However, we anticipate that the data collected during this pilot project will help to answer the following research questions: 1. What are the needs of South Asian women with breast cancer? 2. What are the most effective and culturally appropriate means of reaching South Asian women diagnosed with breast cancer and assisting them at the time of diagnosis through survivorship? We will recruit 40 South Asian women, diagnosed with breast cancer within the past 5 years, from four of the largest South Asian groups in Los Angeles (Indian, Pakistani, Sri Lankan, and Bangladeshi) to participate in individual interviews. Participants will be recruited through established relationships with South Asian community leaders and physicians. Interviews will be conducted by trained bilingual interviewers in each subject's native language. Interviews will assess psychosocial and practical needs as well as relevant cultural factors, psychological functioning, role functioning, physical status, and use of medical care from the time of diagnosis through survivorship. Ten key informant interviews will be conducted with South Asian community leaders to gain a broader perspective on these issues. Content and descriptive analyses will then be conducted to gain an understanding of the sample's needs and functioning. Finally, we will outline an intervention to be refined and evaluated in a second study, potentially through a CRC Full Award. No previous studies have assessed the needs of South Asian women diagnosed with breast cancer. Thus, few culturally appropriate and in-language services have been developed for this growing population. This study will provide the information necessary to outline an intervention to meet the needs of South Asian women with breast cancer and build the infrastructure to implement and evaluate this intervention in a future study. Although initial research efforts involving ethnic minority groups are most successful when tailored to the target ethnic group, results from studies such as the one proposed here have application to the broader population of women with breast cancer. To conduct this project, UCLA investigators, Dr. Beth Glenn and Dr. Roshan Bastani have partnered with Mr. Zul Surani and Ms. Jina Peiris, of Saath: South Asian Cancer Foundation, a non-profit community organization dedicated to assisting South Asians with cancer from diagnosis through survivorship. Saath and UCLA will function as equal partners in conducting the proposed project. We will involve the broader South Asian community in all phases of the project. We have established a community advisory network including physicians, community, and religious leaders from each of the South Asian groups represented by the study. These individuals are well connected within their respective communities and will be in contact with these communities throughout the study to elicit their input and to ensure the dissemination of the results following study completion. We will also conduct key informant interviews with community leaders to solicit their input about the best way to reach this population and the most culturally appropriate method of intervening.
Final Report (2008)
Increasing numbers of South Asian women are diagnosed with breast cancer each year; however, no previous studies have assessed the psychological, social and practical needs of this growing population. Consequently, few culturally appropriate and in-language services are available to assist them. South Asians are the third largest Asian group in the US and California has the largest population of South Asians of any state. Previous research has demonstrated that one size does not fit all when it comes to approaching ethnic minority communities. Given the uniqueness of this population it is likely that they have distinct needs and would benefit from a targeted intervention. This pilot study aimed to assess the needs of South Asian women with breast cancer and outline the essential components of an intervention to meet these needs. We believe we were very successful in meeting all project aims. Semi-structured interviews were completed with 40 South Asian breast cancer survivors and 10 key informants from the community. Although overall our efforts were successful, challenges to recruitment were present. Some women were hesitant to participate due to the continued social stigma attached to breast cancer within the South Asian community. In addition, recruitment efforts had to be planned around religious and cultural events (e.g., Diwali, Eid). We were able to overcome these barriers through close relationships established by Saath with survivors and community organizations. In addition, interviewers were also community members, which fostered trust and willingness among potential participants. Research accomplishments included developing a data collection instrument, obtaining UCLA IRB approval, identifying and training South Asian community members to serve as interviewers, recruiting survivors and key informants, conducting interviews, and compiling and analyzing data. A portion of results were presented at the 2007 CBCRP meeting. In addition, the results of interviews with survivors and key informants were used to develop a proposal for a CBCRP Community Research Collaboration Full Award, which was submitted in February 2008. Key findings that shaped our intervention development include: expanding our intervention program to meet the needs of at-risk women, addressing social stigma, involving South Asian breast cancer survivors throughout the research process, developing some kind of one-on-one intervention, and the important role of spirituality in the breast cancer experience. Furthermore, key informants highlighted the importance of promotion of healthy lifestyle factors in the community and the use of religious and community networks as avenues for reaching South Asian women. We are in the process of disseminating the results of the pilot project locally through well-established relationships and South Asian media. Next steps include securing funding to implement the intervention developed as a result of this pilot phase
Symposium Abstract (2007)
Background: Breast cancer is a growing problem among South Asian women in the United States. While increasing numbers of South Asian women are diagnosed with breast cancer every year; few published studies have examined the unique needs of this population. The goal of this study is to conduct semi-structured qualitative interviews to capture information about the needs and experiences of these women. Method: South Asian women with a previous diagnosis of breast cancer were asked to participate in individual interviews. All interviews were audiotaped and transcribed. Content analysis was conducted to identify relevant themes pertaining to ten conceptual domains (e.g., spiritual, social, access to medical care, role functioning, cultural beliefs). Results: Eight South Asian women were recruited from the community to serve as interviewers. Interviewers speak English and a variety of South Asian languages including Hindi, Bengali, Urdu, and Sinhalese among others. Our goal is to conduct interviews with 40 South Asian women. Approximately 75% of planned interviews have been completed. Participant recruitment has been the primary challenge faced by this study. A number of strategies have been employed including advertisements in ethnic print media and outreach at cultural events, health fairs, and religious settings. Study staff have found that many survivors are interested in contributing to research but are hesitant to participate due to the ongoing stigma of breast cancer in the community. Results of interviews conducted to date suggest that cancer continues to be a taboo subject within the community. Related to access to care participants have reported a wide range of experiences with some women having optimal care while others reported difficulties in access related to insurance coverage. There were also a range of experiences pertaining to social support with some women feeling very strongly supported by family and community members to those feeling alienated by the South Asian community due to their cancer status. Furthermore, findings suggest that the women in our sample also had a range of attitudes towards the role of spirituality and religion throughout their breast cancer experience. While some found their religious or spiritual beliefs to be a strong comfort, others felt that religious or spiritual principles negatively impacted their breast cancer experience. Most participants suggested that in-person assistance provided by cancer survivors near the time of diagnosis and throughout the treatment process would be beneficial. Discussion: Results suggest that the stigma of breast cancer in the community plays a significant role in the experiences of South Asian women related to social and psychological functioning. South Asian survivors may be important components of interventions to help these women adjust to their disease and reduce the negative impact of social stigma.