Cancer doesn’t discriminate in how it affects people of different cultural and economic backgrounds, but opportunities to fight the disease are not always on the same battlefield.
Researchers from USF’s College of Public Health (COPH) are shedding light on one aspect of the issue, summarized in the report “From Where Are the Latinos to How to Find Them: A Qualitative Study to Inform Recruitment Efforts in an On-going Psychosocial Cancer Trial for Dyads of Latina Cancer Survivors and Their Intimate Partners,” published this month in the journal Psycho-Oncology.
The report describes how the underrepresentation of Latino cancer survivors and their intimate partners (IP) in psycho-social cancer trials hinders progress in tackling the challenges in prevention and control. The researchers want to explore recruitment and enrollment strategies that would improve couples' communication and intimacy following a breast cancer diagnosis.
“To truly benefit from cancer research, it’s important for patients to take part in studies that test new programs and treatments,’’ said Rolando Trejos, a doctoral candidate at COPH and lead author of the study. “However, many Latinos who are diagnosed with cancer often don’t get the opportunity to join these studies. This lack of participation makes it hard to learn how well these new methods work for them.’’
Rolando Trejos (Photo courtesy of Trejos)
The findings note that Latino couples are motivated to participate for altruistic reasons and value personal relationships, but research efforts must also address cultural taboos around intimacy and confidentiality.
Often, researchers will discuss their limitations in having Latinos participate in cancer studies, but less than 6 percent of Latinos diagnosed with cancer join these studies. This low participation rate raises the question in the study’s title, “Where are the Latinos?” which points to a bigger issue of limited involvement in cancer research.
The USF paper included the perspectives of Latino cancer survivors, their spouses, health care professionals who deliver services to cancer survivors and other members of the community involved in designing the strategies to be implemented in the study.
“In our research, we found that cancer survivors and their partners are interested in participating in cancer studies together,’’ Trejos said. “They believe that helping others in their community is just as important as their own personal benefits from the study. They also care a lot about keeping their personal information private and confidential, as this is a significant concern for them.’’
Summary of the COPH study:
Methods:
The team applied a structural coding approach and content analysis methodologies to identify emerging themes on recruitment used to inform strategies in an on-going psychosocial cancer trial. The study involved 26 people in interviews and focus groups. Other data sources included community advisory board meeting minutes.
Results: The emerging themes are:
- Desire to participate together
- Interest in dyadic cancer navigation
- Impact of altruism in Latino enrollment decision-making (to enroll vs. not to enroll)
- Understanding Latino cultural values in the context of recruiting and enrolling Latinos and their intimate partners
- Navigating Latino taboos regarding intimacy and confidentiality for recruiting
Conclusions:
The findings underscore the importance of developing, implementing and evaluating strategies to recruit Latinos that acknowledge altruism and trust in research personnel, and to promote participation of intimate partners and family members.
The findings are currently being implemented through USF’s Together After Cancer trial, led by Dr. Dinorah Martinez Tyson, professor in COPH’s Department of Community Health Sciences. It will help evaluate the effectiveness of a self-help program for breast cancer survivors and their intimate partners towards improving their mental health, their satisfaction with their relationship and their quality of life.
Gabriella Sanabria is an incoming postdoctoral fellow at Moffitt Cancer Center. (Photo courtesy of Trejos)
These efforts raise critical awareness about the lack of participation and the unique challenges some communities face in relation to research, said Dr. Rafael E. Fuentes, who serves on the community advisory board for Together After Cancer.
“This work serves as a reminder to the organizations funding such initiatives of the importance of supporting research that addresses the well-being of Hispanic/Latino communities,” he noted. “So, by responding to the issues we experience, these organizations can play a vital role and make a meaningful impact.’’
Much of that impact can be felt on an intimate level and the effect of cancer on personal bonds, Fuentes added.
“A cancer diagnosis is a deeply challenging and often a traumatic event, and survivorship feels like a process of rebirth, marked by rediscovery and transformation of self,’’ he said. “After cancer, many couples find themselves navigating a ‘new beginning,’ as they work to redefine their identities and their relationship. This research represents an opportunity to explore how survivors and their partners can strengthen communication, deepen mutual understanding and walk together through this journey of healing and renewal.’’
Rolando Trejos, and Dr. Melody Chavez, project manager. (Photo courtesy of Trejos)
Others involved in the study include:
- Dr. Melody Chavez, project manager for the Together After Cancer trial
- Dr. Gabriella Sanabria, incoming postdoctoral fellow at Moffitt Cancer Center
- Erik Ruiz, doctoral candidate at COPH
- Gabriel Quiros, post-baccalaureate fellow at the National Institutes of Health
- Dr. Nele Loecher, postdoctoral research associate at St. Jude Children's Research Hospital