Latinas' Experiences of Breast Cancer Treatment

Institution: Palo Alto Medical Foundation Research Institute
Investigator(s): Carla Gomez, LCSW - Meghan Halley, Ph.D., M.P.H. -
Award Cycle: 2013 (Cycle 19) Grant #: 19AB-1300 Award: $212,648
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer



Initial Award Abstract (2013)

Background: Though Latinas are less likely to be diagnosed with breast cancer than White women, when they are diagnosed, they are significantly more likely to die from breast cancer. This is in part because Latinas are less likely to receive regular breast screening. However, there are also differences in the treatments received by Latinas and White women. Though these different patterns of treatment among Latinas with breast cancer are well documented, it remains unclear why these patterns exist. The proposed pilot study will take a comprehensive approach in order to understand key underlying factors – including barriers, social and cultural norms, and individual goals and preferences – shaping treatment experiences and decision-making among low-income Latinas with breast cancer.

Hypothesis/Questions: The guiding hypothesis of the overall project is: breast cancer treatment experiences and outcomes will be improved among low-income Latinas if individual goals and preferences, cultural beliefs, and external barriers are together examined and targeted for intervention. In this proposed pilot work, we will gather information on these multiple factors in order to design a community-based intervention to improve breast cancer treatment. The pilot project will create the foundation on which we can test this hypothesis in the follow-up three-year study. The products of this study will include: 1) a detailed description of the multiple factors shaping breast cancer treatment experiences and decision-making of low-income Latinas in Santa Cruz County; and 2) a community-identified list of priority factor(s) to be targeted for improvement.

Specific Aims: Our first aim is to conduct in-depth interviews and structured surveys with low-income Latinas with breast cancer, their first-degree relatives and their professional care providers in order to examine and identify the underlying individual, socio-cultural, and structural factors shaping the treatment experiences and decision-making of low-income Latina breast cancer patients and survivors in Santa Cruz County. Aim Two (A2): Drawing on the factors identified in A1, our second aim is to conduct Community Stakeholder Forums with members from the community. We will use these forms to identify the factor(s) impacting low-income Latinas' breast cancer treatment experiences that the broader community ranks highest with regard to its importance, urgency, likelihood of producing a measurable impact on treatment experiences, and feasibility.

Methods: We will use two research methods to address our specific aims. To address Aim One (A1), we will use Interviews and Surveys with a) low-income Latina breast cancer patients/survivors (n=20); b) first-degree relatives of low-income Latinas breast cancer patients/survivors (n=10); and c) professional care providers serving low-income Latinas (n=10). Interviews and surveys will be used to collect community-identified factors shaping breast cancer treatment experiences and decision-making from the multiple perspectives. To address Aim Two (A2), we will utilize Community Stakeholder Forums to share the information collected in A1 with the broader community and identify specific factors to be targeted in a follow-up community-identified intervention.

Impact: The study will add knowledge about underlying factors guiding the treatment decisions and experiences of Latina patients. If our subsequent intervention proves effective, the impact will be to improve treatment experiences of low-income Latinas in Santa Cruz County and to develop a replicable model by which other locations can seek to reduce treatment disparities for Latinas with breast cancer.

Community Involvement: A Community Advisory Board consisting of Latina breast cancer survivors, service professionals at community organizations, patient advocates, and healthcare workers in Santa Cruz County has been formed to ensure we are incorporating the distinct needs of the community and to provide feedback on all study protocols and materials. Community Stakeholder Forums will also be held in order to identify which specific factors (identified in A1) are most suitable from the community’s perspective as the focus of our follow-up intervention.

Future Plans: This CRC pilot study will lay the groundwork for a full CRC study in which we will 1) use pilot study results to develop an intervention targeting the identified factor(s); and, 2) evaluate the impact of this intervention on breast cancer care for Latinas in Santa Cruz County. If successful, our long-term goal is to share this intervention to improve breast cancer care for low-income Latina populations throughout California and the United States.




Final Report (2016)

Although Latinas are diagnosed with breast cancer less frequently than Non-Hispanic White (NHW) women, Latinas who are diagnosed have more advanced cancer. Even though survival rates for Latinas have improved in recent years, when compared to NHW women with similar diagnoses, Latinas still have poorer survival rates. Differences in access to care and treatment quality likely contribute to this disparity. Though different patterns of treatment among Latinas are well documented, it remains unclear why these patterns exist. The goals of this project were to: 1) explore factors influencing low-income Latinas breast cancer treatment experiences; and 2) identify a key factor or set of factors that community members felt were the most appropriate target for intervention.

To accomplish our first goal, our team utilized mixed methods to understand key underlying factors – including individual, sociocultural, institutional, environmental, and policy factors – shaping breast cancer treatment experiences among low-income Latinas in Santa Cruz County. Working together with a dedicated Community Advisory Board (CAB), we completed 12 interviews with healthcare and social service providers and 25 interviews with low-income Latina breast cancer patients, survivors and their caretakers. Though reaching low-income Latinas with breast cancer and their families has been challenging, we have utilized our relationships with community partners to ensure our success.

To accomplish our second goal, we presented our preliminary findings in a series of three community forums, two focused on the broader Latino/a community, and one focused on reaching healthcare providers serving this population. During these forums, we used a social-ecological conceptual framework to describe the range of factors influencing Latinas’ breast cancer treatment experiences. We then asked all forum participants (total n=72) and our CAB members (in a separate meeting) to provide feedback on which factors affecting Latinas’ breast cancer treatment experiences they felt were 1) highly important; 2) urgent to change; 3) had great potential impact; and 4) were feasible to change. Through this collaborative process, we identified the period immediately post diagnosis as one of high importance in shaping patients’ treatment paths and outcomes, and also a time period in need of improvement. Specifically, we identified two factors influencing patients’ treatment experiences to target for intervention, including: a) a lack of access to treatment information and decision support; and b) delays in connecting to existing community resources (social, financial, medical, etc.). While these were not the only factors identified as important, these issues struck a balance between importance, urgency, potential impact and feasibility.

We have submitted a proposal for the next phase of this research, which will involve developing and pre-testing a video-based intervention designed to increase timely access to treatment information and connection to local resources. In a subsequent phase, we plan to conduct a larger evaluation to assess the impact of this intervention on low-income Latinas’ knowledge of and satisfaction with treatment. If successful, our long-term goal is to disseminate this intervention to improve breast cancer care for low-income Latina populations throughout California and the United States.




Conference Abstract (2016)

Cancer de Mama: Latinas’ Experiences of Breast Cancer Treatment in Santa Cruz County

The goal of this pilot community based participatory research study is to better understand the treatment experiences of low-income Latinas diagnosed with breast cancer, and the factors shaping their decision-making about their breast cancer treatment. Though Latinas are less likely to be diagnosed with breast cancer than White women, when they are diagnosed, they are significantly more likely to die from breast cancer. This is in part because Latinas are less likely to receive regular breast screening. However, there are also differences in the treatments received by Latinas and White women. Though these different patterns of treatment among Latinas with breast cancer are well documented, it remains unclear why these patterns exist.

Since September of 2013, our team has been utilizing qualitative and quantitative methods in order to understand key underlying factors – including economic and environmental barriers, socio-cultural norms, and individual goals and preferences – shaping treatment experiences and decision-making among low-income Latinas with breast cancer in Santa Cruz County. Working with our 13 community advisory board members (comprised of advocates, researchers, health care providers, and breast cancer survivors), we completed 25 interviews with Latina breast cancer patients and survivors and their caretakers. In addition, we completed a set of 12 interviews with health care and social service providers serving the Latina community in Santa Cruz County. Though reaching low-income Latinas with breast cancer and their families has been challenging, we have built on our relationships with community partners throughout Santa Cruz County to ensure our success. Following a rapid data analysis, we presented our preliminary findings in a series of three community forums, two focused on the broader Latino/a community, and one focused on providers serving this population.

We are currently in the final phase of our analysis. Our results document the significant struggles newly diagnosed Latinas face in the period immediately following diagnosis. While many issues arose, two stood out, including: 1) the challenges women faced in understanding and making informed decisions about their breast cancer treatment that were best suited for their values and preferences; and 2) the absence of timely referral to available, essential resources to support them during their treatment. Lack of culturally competent support for women making complex decisions about their breast cancer treatment, as well as delayed connection to essential resources for treatment, led many patients to make decisions that they later regretted. In addition, many also faced serious financial, social and/or emotional burdens as the result of their breast cancer that could have been avoided if they had been provided with timely connection to resources and tailored decision support.

In the next phase of this project, we will draw on the findings from our pilot study to develop, implement and test an intervention to improve breast cancer care for low-income Latinas in Santa Cruz County. If successful, our long-term goal is to disseminate this intervention to improve breast cancer care for low-income Latina populations throughout California and the United States.