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Improving community capacity to develop cancer awareness programs.

Abstract: This paper describes how cancer awareness programs are introduced and sustained in South Asian communities in Los Angeles County. The model used to plan this program consists of several phases: 1) an assessment of community readiness, 2) sharing of data, development of partnerships, building a sustainable, infrastructure through culturally specific technical assistance, 3) training and sharing of the most up-to-date and accurate cancer information from the National Cancer Institute. This collaboration was the first step in improving the community's capacity to introduce and sustain breast cancer awareness programs among South Asians in Los Angeles.


A Partnership of organizations involved in cancer research, education, policy and advocacy have identified South Asians as a population in need of research and program development in the areas of cancer prevention and control. This partnership is composed of the National Cancer Institute's (NCI) Cancer Information Service (CIS) Partnership Program Office at the University of Southern California's Norris Comprehensive Cancer Center, and the NCI funded Asian American Network for Cancer Awareness Research and Training, Los Angeles (AANCART L.A.) at the University of California, Los Angeles (UCLA), and the South Asian Network (SAN). This case study provides an overview of how a cancer education initiative was introduced in a Los Angeles community and includes a brief examination of previous awareness and screening efforts targeting medically underserved South Asians.


According to U.S. Census 2000, South Asians (those of Indian, Pakistani, Sri Lankan, Bangladeshi, Nepali, Maldivian, and Bhutanese origin) are the third largest Asian group in the United States. The approximately 1.89 million (Asian American Federation of New York, 2001) South Asians in the United States speak many languages including Hindi, Urdu, Gujarati, Marathi, Bangla, Sindhi, Tamil, Sinhala, Maliyalam, Katchi, and Punjabi. Religions practiced among South Asians include Sikhism, Jainism, Hinduism, Buddhism, Christianity, Zoroastrianism, Sunni and Shia Islam sects such as Ismailis, Bohoras and Ithnasharias. Many of these groups have immigrated to the United States from countries in Europe, Canada, Africa, Southeast Asia and the Pacific Islands (Gupta N, 2002). This diversity creates a challenge in delivering culturally appropriate health education information that will truly reach and promote health enhancing behaviors in these very diverse groups.


Challenges in addressing the needs of this population group include the tremendous diversity among South Asians, as well as language and cultural needs. "South Asians may identify themselves according to regional or religious affiliations. Furthermore, language and regional commonalties may also occur across national lines." (Gupta N, 2002) For example, Ismaili Muslims from Kenya and Hindus or Jains from India may both speak and read Gujarati. Therefore, to reach Gujarati speaking South Asians in Los Angeles, one can access them at Jamatkhanas (Ismailis Muslim place of worship) and temples (Hindus or Jains from India) and/or at India independence day celebrations, Gujarati entertainment events, South Asian grocery stores, Indian movie theatres. Other more acculturated groups may be well integrated into American society, speak English very well and may be accessed in a variety of places including more Americanized as well as traditional and less traditional sites.

Experiences of the CIS Partnership Program Office in Los Angeles show, that places of worship, nationalistic, religious festivals, neighborhoods, informal social networks, informal neighborhood networks and ethnic media provide important venues to reach South Asians. Although, many religious organizations and informal social and neighborhood networks exist in Los Angeles, one non-profit organization in particular provides regular outreach and education to underserved South Asians in Los Angeles. It is the work of the partnership with this agency, the South Asian Network (SAN) what is highlighted in this case study.

The South Asian Network (SAN) has won the trust of their communities and provides ongoing assistance on a variety of areas, especially to newly arrived immigrants. SAN is a non-profit organization based in Artesia, California, located near "Little India". SAN is dedicated to reaching the diverse South Asian communities. SAN with its diverse board, staff, and lay community organizers routinely canvas parts of Los Angeles, Orange and Riverside Counties reaching diverse South Asians disseminating important health, civil fights, and social service information mainly to the low-income segments of the community. An office in Artesia provides in-language referrals to people who call in seeking further help, interpretation and navigation. This case study will document partnership efforts between the CIS, AANCART and SAN to work with the communities they serve.


Very little data exists on the health of South Asians in the United States. The South Asian Public Health Association (SAPHA) has initiated this effort with the launch of its "Brown Paper" which provides an overview of demographics and current literature on health problems affecting South Asians, in addition to identifying important data gaps (SAPHA, 2002). Existing data from focus groups conducted with South Asian women in Los Angeles (Surani, 1995) about cancer show very little awareness among South Asian women about cancer risk and methods of early detection. For example, focus groups conducted for Partnered For Progress, Los Angeles County Breast Cancer Early Detection Program (PFP BCEDP) in 1996 with Hindi and Gujarati speaking uninsured South Asian women at 200% of Federal Poverty Level, showed 70% of the participants did not get a mammogram in the past 1218 months (Surani, 1995). In addition, many barriers to breast cancer early detection exist as documented by a survey conducted in 1996 by UCLA's Jonsson Cancer Center (Umme Shefa Warda, 2000). Data collected in a convenience sample of 170 South Asian women in community settings indicate barriers such as cost, transportation, lack of awareness of the procedure, lack of a physician referral, and lack of health insurance as some of the reasons why these women did not participate in regular screening (Umme Shefa Warda, 2000). A review of these data in 2002, by SAN staff and volunteers confirmed that many of the same barriers still exist and culturally appropriate language specific education in the community is needed. In another focus group conducted with English and limited English speaking South Asian, Medicare-eligible women, strong recommendations were made to conduct culturally appropriate education on breast cancer in these types of community settings (CMRI, 1999).

In 1997-1999 UCLA's Iris Cantor Center for Breast Imaging at the Jonsson Comprehensive Cancer Center developed a mobile mammography initiative that targeted South Asians in addition to other ethnic groups in Los Angeles. The mobile mammography van traveled to South Asian places of worship and cultural events, screening hundreds of uninsured women through partnerships with religious and community organizations. Although, the effort successfully screened over 400 South Asian women, (Umme Shefa Warda, 2000) insured and uninsured South Asian women are still underutilizing breast and other cancer screening services according to SAN staff and volunteers.

The lack of sustained cancer education programs in Los Angeles targeting South Asians, the high number of South Asian women still not participating in cancer screening programs, and the existence of many barriers, (Umme Shefa Warda, 2000) and our own experiences in working with this population group, prompted the need for CIS and AANCART to collaborate and introduce cancer education programs targeting South Asians in Los Angeles through this trusted community based agency, the South Asian Network. The technical assistance and training program was introduced using a culturally specific empowerment and capacity building partnership model for medically underserved South Asians in Los Angeles developed by the Cancer Information Service Partnership Program Office based on NCI guidelines.


The CIS and AANCART L.A. entered into a partnership with the South Asian Network (SAN) to provide the latest, most accurate cancer information to South Asian communities throughout southern California and Los Angeles county in particular.

The NCI's Cancer Information Service is the nation's foremost source for the latest and most accurate cancer information for patients, their families, the public, as wall as health professionals. Through Partnership Program CIS expands its reach of the program to segments of the population not traditionally reached by the Information Service (1-800-4CANCER,, LiveHelp).

AANCART is the first-ever national cancer awareness, research and training infrastructure intended to address Asian American concerns by building a robust and sustainable infrastructure to increase cancer awareness, research and training among Asian Americans. Funded by the National Cancer Institute, to establish partnerships between AANCART and other entities to promote greater accrual of Asian Americans into clinical and prevention trials. AANCART is also training Asian Americans to develop pilot programs in four target regions (New York, Los Angeles, San Francisco, Seattle) to formulate and successfully implement grant funded research to reduce the burden of cancer among this population. (

SAN is a non-profit, non-partisan, secular, community-based organization dedicated to promoting the health empowerment and solidarity of persons of South Asian origin living in Southern California. Fundamental to SAN's Mission is the promotion of equality for all. SAN provides health education, health care access assistance, assists South Asians in legal matters, educates the community on hate crimes and provides family support services, including domestic violence case management. Services are provided in Hindi, Urdu, Gujarati, Bengali, Marathi, Punjabi, Tamil, Nepali, Sinhala, Telugu, Katchi, and Kannada. (

Through a series of meetings with SAN leadership and organizers of cultural and nationalistic community events, AANCART L.A. discussed the need for cancer awareness and research. CIS expertise was also introduced to the communities. One-on-one meetings were also held with SAN board members by AANCART L.A. to help community gatekeepers understand their cancer burden. Relationship building phase also included CIS participating in various community events, discussions, and meetings.


A partner capacity-building modal utilized by the CIS was implemented and culturally adapted to include SAN. This model calls for not just providing training to staff but also to provide technical assistance in the areas of program planning, development and evaluation. A secondary objective of this model was to develop an infrastructure through which cancer prevention and control research could be conducted and eventually sustained by this community and its leadership.

The implementation of the partnership model consisted of several phases: 1) An assessment of community readiness and capacity; 2) development of partnerships, building a sustainable infrastructure through culturally-specific technical assistance; 3) training and sharing of the most up-to-date cancer information from the National Cancer Institute to develop cancer control priorities for the community; and 4) Networking and Community input.


Prior to entering into a partnership with SAN, CIS assessed its readiness and capacity. South Asian Network competencies were assessed by CIS through agency staff and select stakeholder (board members and volunteers) interviews. Staff, volunteers and directors were questioned on the following four areas: a) SAN mission, vision, goals and objectives and their compatibility to CIS' objectives; b) Methods and ability to reach medically underserved South Asians to disseminate cancer information in a culturally appropriate ways (Newsletter, website, outreach at social and cultural events); c) Willingness to work with CIS to improve SAN's capacity to implement, evaluate and sustain educational efforts and provide cultural competency training to partners; d) Long term commitment to improve the community's knowledge of their cancer risk and ways to reduce the burden of cancer; and e) Ability to participate in the development of a sustainable cancer control agenda for South Asian communities in Los Angeles.


The next step was for CIS and SAN to enter into a partnership. The process began with AANCART presentations and sharing of information with staff and community leadership on common cancers among South Asians and other Asian communities, thus helping prioritize cancer control efforts for this population. CIS began capacity building services by networking SAN to funders, cancer screening providers, consumer support services, researchers and cancer survivors. SAN was already networked to AANCART L.A. and, as a result, had access to nationally known researchers, medical staff and South Asian Masters in Public Health interns from UCLA School of Public Health, willing to help. SAN was linked to the State funded Los Angeles County Breast Cancer Early Detection Partnership (BCEDP) through which free and low cost services could be accessed by uninsured and underinsured women in the community. Other linkages included foundations and funding sources (Susan G. Komen Foundation, REACH 2010's Promoting Access To Health (PATH) Project, and Asian Pacific Islander Tobacco Education Network). South Asian cancer survivors who are part of the API National Cancer Survivors Network located at the Asian Pacific Islander American Health Forum also assisted in providing input.

CIS provided technical assistance in program planning and evaluation which was extended further through the placing of AANCART interns at the SAN office. SAN staff AANCART interns, and CIS identified community-specific approaches to infrastructure development and ways to disseminate the latest, most accurate cancer information. For example, developing tailored in-language messages for dissemination through lay outreach workers, ethnic media, and providers. Social marketing approaches were also discussed for consideration. SAN office staff were also trained on how to access and navigate women through the health care system and ways to document processes and outcomes were also introduced by designing intake forms and logs.


Data sharing on specific barriers collected by UCLA also helped inform program design. Data provided By AANCART L.A. and specific technical assistance from CIS helped SAN create a framework for cancer control in the South Asian communities.

CIS and AANCART L.A. partnered to provide educational opportunities for SAN staff, volunteers and board members. These included a series of trainings which improved knowledge on topics such as: a) Cancer in Asian and South Asian populations, barriers to early detection; b) Utilization of NCI Products, Services and educational materials ; c) Overview of breast, cervical, prostate cancer and tobacco control (separate trainings); d) Screening, diagnostic and treatment resources for breast, cervical, prostate cancer programs and an overview of state funded programs in California; e) Tobacco control and access to cessation resources; f) Cancer education program planning, implementation and evaluation; g) Making health communications programs work: evidence based approaches to community breast and cervical cancer education and their adaptation in the South Asian communities; h) Colorectal cancer among Asians; i) Cancer prevention and control among Asians: AANCART L.A.'s annual symposium.


AANCART L.A. had provided some data collected through surveys and focus groups on knowledge, beliefs and barriers to breast cancer early detection, which was also provided through community in put. Through meetings with SAN community lay health outreach workers, staff and volunteers, CIS was able to understand specifics about target populations, such as diversity, insurance status, and common barriers. Outreach by SAN is generally conducted at places of worship, cultural and community festivals and nationalistic events. Community input was provided on recommended outreach strategies and changed where necessary. The input process was central to developing messages, outreach strategies, and educational materials.


Interviews, in the needs assessment phase, revealed that SAN had strong experience in disseminating information to diverse South Asian communities in Los Angeles and a long history of helping the communities in areas of critical need. SAN staff and board include representation from India, Pakistan, Sri Lanka, Bangladesh, and Nepal, speak Hindi, Urdu, Gujarati, Bangla, Nepali, Tamil, Sinhalese and are also linked to religious and cultural communities reaching Hindus, Muslims, Sikhs, Buddhists, Zoroastrians, Ismailis, Bohoras, Ithnasharias, and Syrian Christians. This enables the agency to gain access to these communities and networks. It was dear that SAN had the ability to reach medically underserved South Asians with vital cancer information and that a capacity building model would help improve staff, volunteers and leadership's ability to educate the communities they serve. SAN also has office staff who provide referrals to clients who call, follow up with them, and track activities. This initial assessment paved the way to the development of the initiative and the establishment of the partnership among SAN, CIS and AANCART L.A. that would have an important impact in the community.


Several important outcomes have been achieved with the establishment of this partnership that will help improve the quality of life and health of the South Asian community. These outcomes have included but not been limited to: 1) the development of a clearer understanding of the burden of cancer among South Asians; 2) gains in cancer awareness and control as a priority issue in this population; 3) increases in knowledge and resources available to address cancer awareness in this population, including but not limited to technology transfer and the translation of research and other information provided by the CIS to these communities; and 4) the training, by AANCART L.A., of student interns that will be able to address cancer awareness and control issues among South Asians in culturally competent ways. Measurement of these outcomes include improvement in cancer priorities and knowledge among SAN staff, the development and submission of at least four program proposals to funding sources, regular use and promotion of NCI resources among staff and the communities.


SAN's participation on AANCART's Steering Committee led to an understanding of the cancer burden among South Asians and interventions that were necessary to address the cancer burden. CIS trainings and networking opportunities led to the development of cancer awareness and referral programs using a variety of approaches. These program plans were submitted to a variety of sources, and many were funded. For example, BCEDP funded the implementation of culturally appropriate outreach at community events, mosques, temples, gurudwaras, jamatkhanas, apartment buildings, Indian grocery stores, and movie houses. Health education at these venues was conducted in Hindi, Urdu, Gujarati, Punjabi and Bangla. This prompted calls to the SAN office, where women were linked to cancer screening resources in their areas and support, such as linguistic assistance, was provided to ensure women kept their appointments.

Furthermore, SAN staff, board members and volunteers participated in the various CIS and AANCART L.A. trainings which helped improve their knowledge of the burden of disease in their communities.

A program framework was developed, using NCI's "Breast and Cervical Cancer Programs in your Community". This includes a patient flow chart, a list of breast and cervical cancer screening locations, and diagnostic and treatment resources. This helped SAN staff guide South Asian women.


SAN has adopted cancer education as a priority area in its health education program and is committed to procuring funding to sustain cancer education efforts. Although much effort in terms of data provision, and framing was provided by credible sources such as AANCART L.A. and CIS Partnership Program worked very closely with agency staff to launch cancer awareness efforts, we believe that this close collaboration was critical in helping SAN develop programs and conduct research with a cancer related emphasis.

This policy change resulted in several program proposals being developed and submitted for funding by SAN leadership. An important outcome of this has been that additional resources have now enabled SAN staff and volunteers provide cancer education to underserved women at various community events. SAN staff and community leaders have also accessed NCI's Cancer Information Service and developed in-language materials in South Asian languages. These have been disseminated by SAN staff and lay community organizers. This is evidence of how cancer education is being integrated into SAN's existing outreach efforts. County and other health providers have thus been receiving input on ways in which the systems could better serve South Asians in their respective communities. In addition, SAN staff developed cancer education messages and approaches that are being used by lay community organizers when conducting outreach and reflect latest information from the NCI.

Data analysis of activities being tracked by SAN still needs to be conducted to understand the community impact of this intervention (improved level of awareness, participation in screening, maintenance of behavior changes etc.). But the outcomes mentioned above seem quite promising.


UCLA School of Public Health student interns have been placed by AANCART L.A. at SAN and under the guidance of researchers are assisting with program evaluation. CIS and AANCART L.A. plan to keep cancer education at the forefront of the South Asian community's health education agenda through regular meetings, invitations to conferences, training programs and technical assistance. Regular CIS bulletins keep the community updated on new developments in cancer and funding opportunities to sustain their programs. AANCART L.A. continues to share data with SAN as it becomes available which has significantly helped SAN grow its cancer education efforts. The ability to receive hands-on-training on a day to day basis via SAN staff, CIS professionals and AANCART L.A., has allowed student interns to be aware of the culture and the cultural competency needed to address the issues of South Asians.

SAN and AANCART L.A. have also forged a strong relationship though which research on cancer prevention and control has begun. For example, the collaboration has resulted in several research projects such as South Asian Community Needs Assessment Survey and focus groups to improve the delivery of health information to uninsured Hindi, Urdu, Gujarati, Bangla speaking men and women in Los Angeles. In addition, the State of California recently funded the California Asian Indian Tobacco Survey at UCLA which is consulting with SAN to implement the research.


SAN is working with AANCART to evaluate the following programs that have been funded in part as a result of this initiative: Breast cancer outreach and inreach program; Breast and cervical cancer education materials development in Hindi, Urdu, Gujarati, Bangla and Punjabi; and a Hindi language media campaign to improve access to mammography screening for South Asian women in Los Angeles; Tobacco control among South Asians in Los Angeles, as well as a South Asian prostate cancer awareness project.

A lot can be learned from the projects implemented that will inform the continuation of programs or development of newer strategies. AANCART is closely working with SAN.


The National Cancer Institute has established as its mission the "discovery, development and delivery" of the most up to date cancer research and cancer-related interventions through clinical and public health programs, and to take a lead in the elimination of cancer-related health disparities among medically underserved populations. As evidenced by this case study much work is still needed in this area among South Asians to meet these goals. The inclusion of this diverse population group in clinical and prevention trials and in research, and the development of innovative interventions for this population are imperative. Communication of information and technical knowledge to gatekeepers in the South Asian community who are at the forefront of addressing the health and social needs of this population is also critical. This case study illustrates one example of how the mission of "delivery" and technology transfer among this population is being met by a partnership of organizations, headed in part by individuals and efforts of the CIS.

The need to continue, strengthen and enhance these types of efforts are crucial especially as one considers that South Asians are the third largest Asian group in the Unites States. The model presented in this case study has worked well for California and Los Angeles in particular. We hope that other states with large South Asian populations may be able to learn from our endeavors and modify these perspectives in order to adapt them to the specific cancer awareness needs of the population groups and individuals of South Asian descent in their respective states. States with the largest South Asian populations, in descending order are: California, New York, New Jersey, Texas, Illinois, Pennsylvania, Michigan, Virginia, Maryland, Florida, Massachusetts, Georgia, Ohio, North Carolina and Washington (Gupta N, 2002). Our case study has shown that in Los Angeles, South Asians can be reached in culturally competent ways via a variety of messages infused with culturally appropriate information, as this case study and existing literature outlines. In additional sustainable action is possible by building capacity and an infrastructure in the community that enhances cancer awareness and makes this a priority for the population.

Our experiences in this case study have pointed to how the diversity in this population creates a challenge in reaching all the various groups with audience-appropriate cancer information. More work in this area is certainly needed. Cancer awareness efforts can be facilitated by partnering with individuals and organizations with varied skills and expertise and working closely with groups that have won the trust of these communities. In our case study SAN was the key agency to facilitate this process. SAN has a unique structure which brings together a team of leaders and staff from diverse communities who can share resources and approaches in the interest of their communities. This approach has been successful in providing information and referrals to medically underserved South Asians.

Strengthened by the knowledge and cancer expertise via the CIS Partnership Program Office at USC and AANCART L.A. at UCLA, SAN used the opportunity to integrate cancer information into existing efforts, and created new opportunities via the development of innovative programs to accomplish their mission and priority. Although this brought about new challenges such as addressing the priorities of each partner, we were able to reach a common ground that facilitated the transfer of technical knowledge to those most in need. The strength of the partnership and the trust placed in the partnerships relationships allowed us to address new challenges that came about in the process, such as addressing the uniqueness of the various population groups included among South Asians and providing equity in information and services for all South Asian communities. This same attention to detail and building of relationships helped enhance our recruitment efforts in these communities and provided us with a forum for increasing capacity and addressing cultural competency issues via trainings for providers. This in turn helped ultimately to improve the quality of services, further researching the unique needs of as many communities as possible.

In addition, the partnership was able to utilize research, information from the most up to date sources of the CIS and other data to inform program planning and advocacy; sparking a more comprehensive approach to cancer prevention and control for South Asians.

Although South Asians have been categorized as a "model minority" with high levels of education, recent waves of immigration in the last ten years has brought with it a huge underclass who are often not well educated (25% have Limited English Proficiency), are uninsured (21%), work in low wage jobs (Asian Indians ranked 12th in National Poverty Level ranking), and are victims of anti-Arab/South Asian sentiments making them hesitant to access public services (SAPHA, 2002). The distribution of knowledge, screening and cancer awareness in this population follows more of a bimodal distribution, where some groups have greater and better access while others are sorely lacking.

This partnership model has shown that we are able to develop strong and sustained collaboration with different groups of people, with different disciplines, and with individuals and organizations with different emphasis, focus and priorities but with an interest in achieving a common goal. This partnership model is an example of how in Los Angeles we have been able to better serve the cancer needs of such diverse groups as South Asians, and to do so in a culturally grounded collaborative and respectful process. The provisions of our services, the sharing of resources, the transferring of technical knowledge to potential users, and the communication of the most up to date cancer research and information to this immigrant highly underserved community in the United States, is one of the contributions we can make as health providers to achieving social justice world wide.


The authors would like to thank South Asian Network volunteers, staff and board members who are dedicated to improving the health of their communities and devote time to provide information and access to underserved South Asians in Southern California. At SAN, Pradeepta Uphadhyay and Farzana Fazelbhoy were very helpful in providing information on SAN's programs. A special thanks is extended to AANCART staff and interns Koy Parada MPH., Michelle Lim, Sheila Jain, MPH and Punam Parikh, MPH for their expertise and time. We would also like to thank Dr. Ron Ross, Dr. Phyllis Rideout and Dr. Jean Richardson at the USC Norris Comprehensive Cancer Center and Dr. Andy Johnson at the Institute for Prevention Research, as well as Michelle Moseley and Sharon Davis at the Northern California Cancer Center for their support of the CIS Partnership Program and other such endeavors to better serve the needs of this and other underserved communities in Southern California.


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Responsibility I--Assessing Individual and Community Needs for Health Education Competency C--Infer needs for health education on the basis of obtained data. Subcompetency I--Analyze needs assessment data.

Zal Surani, B.S.

Lourdes Baezconde-Garbanati, Ph.D., M.P.H.

Roshan Bastani, Ph.D.

Brian Montano, M.P.H

Address all correspondence to Zal Surani, B.S., Partnership Program Coordinator, NCI's Cancer Information Service, Southern California Partnership Program, USC Norris Comprehensive Cancer Center, 1441 Eastlake Avenue, M/S 44, Los Angeles, California 90089-9175, PHONE: 323.865.0384, FAX: 323.865.0134, EMAIL:
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Author:Montano, Brian
Publication:American Journal of Health Studies
Geographic Code:1USA
Date:Sep 22, 2003
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