Psychosocial Support Services for Latinas with Breast Cancer

Institution: University of California, San Francisco
Investigator(s): Carmen Ortiz, Ph.D. - Anna Napoles, PhD, MPH -
Award Cycle: 2005 (Cycle 11) Grant #: 11AB-1600 Award: $99,200
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side



Initial Award Abstract (2005)
Introduction: Women with breast cancer, a life-threatening illness, often experience emotional distress including depression, anxiety, and relationship problems. Psychosocial support services can greatly improve the quality of life of some of these women, and it is now recommended that psychosocial services be offered as a part of routine cancer care. Latina breast cancer patients infrequently utilize these services, although they may be more likely than White women to experience distress due to breast cancer. This underutilization by Latinas is poorly understood, but possible explanations include lack of awareness, physician recommendation, and culturally and linguistically adequate programs. Several Latino community organizations have joined to increase access to and capacity for these services.

Research Questions: This research project aims to answer several questions. First, what individual, social and cultural factors increase or decrease access to support services among Spanish-speaking Latinas with breast cancer? Second, what components of these support programs are most useful from the perspective of Spanish-speaking Latinas who have used support services? Finally, what type of training do peer support counselors need to enable them to provide adequate support to Latinas with breast cancer? Based on this information, a culturally appropriate outreach and support intervention will be developed with several community organizations to train Spanish-speaking breast cancer survivors as peer support counselors (PSCs). Thus, the community identified goals of increasing access to and capacity for psychosocial services will be achieved.

Methods: We will conduct group interviews separately with Latina women who have and have not used formal support services and ask them about factors that may or may not have influenced their awareness of services and decision to use them. We will also individually interview current and former Spanish-speaking breast cancer clients of the Círculo de Vida support program to ask them to identify the aspects of the program that were helpful, those that were not, and their recommendations for improvement. Finally, we will conduct interviews with current peer support counselors (with a number of Northern California organizations) who provide services to Spanish-speaking Latinas with breast cancer to develop a formal PSC training program. An advisory board composed of professionals and Spanish-speaking survivors will guide us as we finalize and train a new core of PSCs and disseminate the training program.

Innovative Elements: While studies have looked at the benefits of support services among women diagnosed with breast cancer, research has overlooked the topics of access to and outcomes of services among Latina women. Two community organizations, one with extensive experience and the other new to providing support services for women with breast cancer, will work with a Latina researcher from UCSF to identify optimum outreach and support strategies and develop a training program to prepare Latina breast cancer survivors as PSCs. This study is unique in that it will bring together women with breast cancer, peer support counselors, community advocates, researchers, and clinicians to increase access to support services and create community capacity to meet the increased demand for culturally and linguistically appropriate psychosocial support services.

Community Involvement: Círculo de Vida (Circle of Life) is a successful community based organization that provides outreach and peer support to Latina women diagnosed with cancer. Una Mano Amiga (A Helping Hand), a multi-agency coalition, has requested training on the model used by Círculo de Vida so that it can establish psychosocial support programs for women in the community it serves. The researcher will work closely with Círculo de Vida to identify program components that are effective in reaching Latinas and improving their psychosocial adjustment to breast cancer. The study will create a forum in which community leaders, local breast cancer advocates, and peer counselors can come together and develop a model that will increase the capacity of community organizations to provide psychosocial support and referral services to Spanish-speaking Latinas with breast cancer.


Final Report (2007)
Latina breast cancer patients infrequently use cancer support services, even though they may be at higher risk of psychosocial morbidity than White women. This under use has not been well-studied In this collaborative study by the Academic Partner (AP), UCSF, and the Community Partner (CP), Círculo de Vida (CDV), we obtained data on: 1) facilitators and barriers to use of support services among Spanish-speaking Latinos with cancer; 2) the psychosocial needs of this population; and 3) suggestions for a peer support counselor (PSC) program for Spanish-speaking Latinas with breast cancer. We conducted a telephone survey of 89 Spanish-speaking Latino cancer patients referred to CDV (including people who did and did not accept services); about 70% were Latinas with breast cancer with less than a high school education. We completed semi-structured interviews with 29 Latina breast cancer survivors who had and had not used support services (most were diagnosed within two years of the interview), and 17 interviews with community advocates working with Latinas with breast cancer (patient navigators, cancer support and education specialists, oncology social workers).

We found that the greatest barriers to use of support services in this population were: lack of transportation, lack of familiarity with the nature of support services, and being unaware that services were available in their local area. For women who had used support services, the most frequently mentioned benefits were, in order of importance: 1) the ability to discuss cancer related issues with a fellow cancer survivor; 2) support and compassion received; and 3) information on cancer and its treatment. The two dominant psychosocial needs in the period following diagnosis were help in addressing an intense fear that they were dying and information to address their sense of powerlessness largely due to the lack of cancer and treatment information in Spanish and the physicians’ time constraints. Community advocates identified four key areas that are critical for addressing the psychosocial needs of this population: 1) the provision of simple information in Spanish on breast cancer, treatments, treatment side effects, and management of side effects; 2) knowledge of community resources; 3) cultural sensitivity; and 4) patient empowerment.

With systematic input from community members, survivors, and professionals, we wrote a resource manual for community organizations on developing a PSC program, and pilot-tested a training program with seven new PSCs. Working with a large group of community organizations, community advocates, and Spanish-speaking Latina breast cancer survivors, we submitted an application for a full CBCRP CRC award to continue our work in this area. Using a randomized, controlled trial design, the proposed study will test a social-cognitive theory-based, peer-delivered intervention that has been adapted for use with Spanish-speaking Latinas with breast cancer. This program could serve as a model to meet the psychosocial needs of other vulnerable women diagnosed with breast cancer.


Symposium Abstract (2007)
Background. Latina breast cancer patients infrequently use cancer support services, even though they may be at higher risk of psychosocial problems than White women. This under-use has not been well-studied.

Goals. To identify factors that influence whether Spanish-speaking Latinas with breast cancer seek psychosocial cancer support services, their psychosocial needs, and the implications of these findings for the development of a peer support counselor (PSC) program for this population.

Methods. In this collaborative pilot study by the academic partner, UCSF, and the community partner, Círculo de Vida (a community-based cancer support center for Latinos; CDV), we conducted a telephone survey of 89 Spanish-speaking Latino cancer patients referred to CDV (including people who did and did not accept services); about 70% were Latinas with breast cancer with less than a high school education. We completed semi-structured interviews with 29 Latina breast cancer survivors who had and had not used support services (most were diagnosed within two years of the interview), and 17 interviews with community advocates working with Latinas with breast cancer (patient navigators, cancer support and education specialists, oncology social workers).

Results. We found that the greatest barriers to use of support services in this population were: lack of transportation, lack of familiarity with the nature of support services, and being unaware that services were available in their local area. For women who had used support services, the most frequently mentioned benefits were, in order of importance: 1) the ability to discuss cancer related issues with a fellow cancer survivor; 2) support and compassion received; and 3) information on cancer and its treatment. The two dominant psychosocial needs in the period following diagnosis were help with coping with an intense fear that they were dying, and information to address their sense of powerlessness. Community advocates identified four key areas that are critical for addressing the psychosocial needs of this population that would need to be integrated into a peer support intervention: 1) the provision of simple information in Spanish on breast cancer, treatments, treatment side effects, and management of side effects; 2) knowledge of community resources; 3) cultural sensitivity; and 4) patient empowerment. With systematic input from community members, survivors, and professionals, we wrote a resource manual for community organizations on developing a PSC program, and pilot-tested a PSC training program. Working with a large group of community organizations, community advocates, and Spanish-speaking Latina breast cancer survivors, we submitted an application for a full CBCRP CRC award to test the effectiveness of a PSC intervention for Spanish-speaking Latinas newly diagnosed with breast cancer.

Implications. Using a randomized, controlled trial design, the proposed study will test a social-cognitive theory-based, peer-delivered intervention that has been adapted for use with Spanish-speaking Latinas with breast cancer based on the results of our pilot study and the CDV PSC model. If proven effective, this program could serve as a model to meet the psychosocial needs of other vulnerable women diagnosed with breast cancer.