Latina cancer survivors often lack health insurance or access to uninterrupted cancer care. Many Latinas experience language/health literacy barriers, feelings of isolation, and beliefs that cancer leads to death. For these reasons, Latina breast cancer survivors often have lower quality of life (QOL) than non-Latina survivors do. Less is known about ways to improve Latinas’ QOL. Family members/friends who serve as caregivers to Latina survivors are also impacted by the diagnosis. Many caregivers feel they do not have the coping skills to support the survivor or care for themselves. They also experience family stress. We seek to conduct a randomized controlled trial with 200 people (100 survivor-caregiver pairs) to improve QOL for survivors and caregivers. Latinas diagnosed at any stage of disease or any amount of time since diagnosis can participate. Our team includes four community-based organizations (CBOs in Washington, DC; NY; CA), researchers, clinicians, patients, caregivers, and advocates. The intervention was developed by Latina survivors and has been used successfully at a CBO for more than two years. Survivor caregiver pairs will be assigned by chance to the intervention or usual care. Latina breast cancer survivors and caregivers assigned to the intervention will attend eight group sessions, held twice a month. Each session will cover a different topic such as communication, stress management, treatment side effects, or impact of cancer on family. Topics will be chosen based on expressed survivor/caregiver needs and provider input, including medical oncologists. Survivors and caregivers in the intervention will meet at the same time, but in separate rooms, letting each express concerns without hurting their loved one’s feelings. Each survivor will identify one caregiver for study purposes, although more than one can attend. A trained facilitator will lead each group. Session topics and format will be the same for survivors and caregivers. After each session, everyone comes together to discuss the topic. No other research has tested this program. We will do so while considering the cultural/linguistic aspects important to Latinos. We will compare the intervention to usual care, in which Latina survivors and caregivers can receive the usual services, including patient navigation (case management) or regular support groups. These services are also offered with respect to cultural values and linguistic needs. Participants will complete surveys prior to the intervention, immediately after, and again six months later. We will measure QOL, communication, satisfaction with care, and adherence to recommended follow-up. If successful, our intervention will improve outcomes for Latina survivors and caregivers. The potential impact of our intervention is large: we can quickly share results through outreach to 150+ local and national groups that provide care and support to tens of thousands of Latino families facing cancer.
Mejorando La Calidad de Vida Para Latinas con Cáncer de Seno - A narrative on efforts to improve the quality of life among Latinas facing challenges due to breast cancer.
Improving the Quality of Life for Latinas with Breast Cancer - A narrative on efforts to improve the quality of life among Latinas facing challenges due to breast cancer.
VIDEO: Improving Quality of Life for Latina Women with Breast Cancer
A PCORI-funded study is testing whether culture-based support groups improve care and outcomes for Hispanic cancer survivors and their families. To watch this video with audio narration, please visit: vimeo.com/179041271