Meeting the self-care needs of Latinas after breast cancer
|Institution:||University of California, San Francisco|
Carmen Ortiz , Ph.D. -
Anna Napoles , PhD, MPH -
|Award Cycle:||2013 (Cycle 19)||Grant #: 19AB-2500||Award: $191,431|
|Award Type:||CRC Pilot Award|
|Sociocultural, Behavioral, and Psychological Issues>Sociocultural, Behavioral, and Psychological Issues: the human side|
Initial Award Abstract (2013)
Introduction: The end of active treatment is often a difficult transition for breast cancer survivors (BCS) filled with fears of recurrence and uncertainty about the future. This difficult transition occurs at the same time that BCS lose the regular support of their treatment team. After treatment, Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse quality of life (QoL) and more pain, depression, fatigue, and concerns about work, finances, and health insurance compared to whites. SSBCS lack culturally and linguistically appropriate information on recommended health care and self-care following active cancer treatment (e.g., management of increased risks of subsequent cancer and treatment side effects) and skills to manage their symptoms after treatment. We need to better understand the issues faced by SSBCS during this challenging survivorship phase and identify the most appropriate and effective programs to help them manage their symptoms and health after treatment.
Question(s) or hypotheses: Our research questions are: 1) From the perspectives of varied stakeholders (survivors, oncology providers, and advocates), what are the most pressing emotional and self-care needs of SSBCS once active treatment has ended? and 2) How appropriate are post-treatment breast cancer support programs that have been tested in White and African American BCS for use among SSBCS? This study will build on prior CBCRP CRC Pilot and Full Awards in which Drs. Nápoles and Ortíz developed and are testing in a randomized controlled trial (RCT) a program called Nuevo Amanecer (A New Dawn), a manualized 8-week stress management intervention for SSBCS women just diagnosed with breast cancer.
AIM 1: Identify the most important informational, emotional, and symptom management needs once active treatment has ended through a cross-sectional survey of a five-county community sample of SSBCS from our Nuevo Amanecer RCT (N˜100).
AIM 2: Identify the content and delivery format for self-care information and skills training to SSBCS following active treatment through 4 focus groups with SSBCS and in-person interviews with 10 SSBCS and 5 oncology providers/cancer advocates.
AIM 3: Incorporating results of aims 1 and 2 and what we learn from research on similar programs and our prior projects: a) develop a program to support self-care of symptoms and emotional needs once active treatment has ended, and b) try out the program with 6 SSBCS.
General methodology: This pilot study will use survey and in-person interviews to generate data to guide the development of a peer-delivered program that will provide SSBCS with the tools to manage their needs in the period following active treatment. Our methods include surveys, focus groups, and in-depth interviews. The in-person interviews will be conducted after the telephone survey so that we can explore the needs identified by telephone, in more depth in-person. The results from the pilot, literature, and our current program will be used to develop a preliminary version of the survivor-to-survivor delivered program to be tried out with 6 SSBCS. The program will be revised based on the input of the SSCBS who try the program out.
Innovative elements: This project is innovative for several reasons. No one has assessed systematically the needs of SSBCS. Only one project has developed and tested a support intervention for Latinas during this important phase, but that study had several limitations. It was small (N=52), did not achieve significant improvements in participants’ physical and mental health compared to a control group, and did not distinguish between English- and Spanish-speaking Latinas.
Community involvement: Our existing field staff (18 SSBCS and advocates), sharing what they have heard from hundreds of SSBCS, have voiced the inordinate challenges that surface as women finish active treatment, i.e., a spike in fear of recurrence and anxiety, uncertainty about what to expect as a result of their treatments, pain and fatigue, and concerns about their families, jobs, finances and insurance coverage. Our five-county partnership consists of an extensive network of community-based organizations and clinical partners, and an active community advisory board and steering committee that are representative of the broader partnership. The partnership generated the idea and has been the impetus for this grant application.
Future Plans: This collaborative project between the University of California San Francisco, Círculo de Vida Cancer Support and Resource Center, and the broader partnership will prepare us to conduct a RCT study of a program for SSBCS during the transition after completing active treatment. It will build capacity among trained community-based research staff participating in the Nuevo Amanecer trial to meet the needs of SSBCS throughout survivorship.
Progress Report 1 (2014)
After active breast cancer treatment, Spanish-speaking breast cancer survivors (SSBCS) suffer worse quality of life, and more pain, depression, fatigue, and concerns about work, finances, and health insurance compared to whites. We need to better understand the issues faced by SSBCS during this challenging survivorship phase and identify the most appropriate and effective programs to help them manage their symptoms and health after treatment. This pilot study will use surveys, focus groups, and in-depth interview data to guide the development of a peer-delivered program that will provide SSBCS with the tools to manage their needs in the period following active treatment.
Our major accomplishments include development and translation of a telephone survey instrument that assesses the post-treatment needs of SSBCS; development of the sampling frame using community and clinical sources; maintenance of a stable academic and community study team; recruitment tracking system development; data management system development; completion of 83 telephone interviews with SSBCS; entry and cleaning of data collected thus far; and descriptive analyses of demographic characteristics of sample thus far.
Plans for next reporting period are to: complete telephone surveys of study participants; complete focus groups and in-depth interviews; analyze telephone survey, focus group and in-depth interview data; develop and pretest a prototype of a peer-delivered program that will provide SSBCS with the tools to manage their post-treatment needs; write a manuscript on the survey findings; and submit a final report.