For new Komen-funded researcher and recipient of the ASPIRE grant, Lianel Rosario, it was a personal experience at home that inspired her to focus her career on end-of-life and palliative care for Hispanic/Latina breast cancer patients and their caregivers.
“My mom was diagnosed with breast cancer,” Rosario said. “It was rough for her and for our family, but my mom is also a clinical psychologist, so it was interesting to see how she was still reaching out to help others while receiving her own treatment.”
As Rosario watched her mom step out of her role as a patient and struggle to help others in need, she saw a clear illustration of an unmet need in her community. “That’s where my passion started,” she said.
Rosario began pursuing a Ph.D. in Clinical Psychology at Ponce Health Science University in Puerto Rico, with a focus on breast cancer research. After noticing that very few of her school projects focused on survivorship, she joined the lab of mentor Normarie Torres-Blasco, Ph.D., whose research focused on palliative care and end-of-life needs for Hispanic breast cancer patients. Through this work, Rosario became more focused on preparing Hispanic women with advanced breast cancer and their caretakers for the road ahead.
“We should focus on helping both patients and caretakers through this process, however possible. Because it’s a very rough and tedious process, and we need to support them any way we can.”
“Just because someone receives a possible terminal diagnosis and enters palliative care, it doesn’t mean it’s over,” Rosario said. “Logically, objectively, we know what that diagnosis means, but they shouldn’t be pushed aside. They’re still here.”
Helping the Hispanic Breast Cancer Community to PREPARE
Despite having lower breast cancer incidence rates than white women, Hispanic women in the U.S. are more likely to be diagnosed at a later stage than white women, and with more aggressive tumors. In southern Puerto Rico, these challenges are further compounded by disparities created by poverty, limited access to health care and recent events like natural disasters and the COVID-19 pandemic.
Rosario and her mentor Eida Castro, Psy.D., from Ponce Health Science University, recently received a Komen ASPIRE grant for Rosario’s project, “PREPARE: Preparing Hispanic Advanced Breast Cancer Dyads for End-of-Life Care.” Through this study, Rosario hopes to reveal what Hispanic patients with advanced breast cancer and their caregivers need to prepare for the complex challenges of end-of-life care.
For many of these patient-caretaker groups, or “dyads,” preparation goes beyond just standard medical care and often includes mental, emotional, educational, family, financial and spiritual support. Through the PREPARE study, Rosario hopes to create programs that provide a more holistic approach to end-of-life care while being culturally sensitive to the Hispanic community.
“We want to develop an intervention to prepare these dyads, but first, we need to know what preparedness is for them. What needs do they have?” Rosario explained.
For the first part of her project, Rosario will conduct multiple interviews to better understand how patients and caregivers define preparedness. She will also determine key needs for both dyad members to be ready for the next steps, including psychological, emotional, educational, familial, practical, financial and spiritual needs. “I really want to hear what the community has to say and how we can help them because this is for them,” Rosario said.
Once she has gathered this information, Rosario will use it to develop culturally sensitive interventions for patient-caretaker dyads in the southern Puerto Rico community. Through these new interventions, she hopes that patients and their caregivers will find benefits beyond their medical treatment, including improved communication and mental health, reduced stress and improved long-term outcomes.
“Breast cancer research is holistic,” Rosario said. “It’s not just basic science; it encompasses so much emotional struggle and change. What’s most exciting to me about breast cancer research today is that we’re including other disciplines.”
Learning to PREPARE for Better Self-Care
It is not uncommon for women diagnosed with breast cancer in the Hispanic community to step out of their role as patients to take care of loved ones. Through PREPARE, Rosario is addressing a critical need in her community – a need that hits very close to home. Like her mom, many Hispanic women with breast cancer overextend themselves to meet the needs of others.
“Part of what we’ve seen is how patients go through their own process; they worry about the caregiver and even say this has to be harder on them,” Rosario explained. “It just shows that they both care and they just want to be there for each other.”
Just as we are told we should put on our oxygen mask before helping others on an airplane, patients must take care of their emotional, physical and mental health first so that they can have an opportunity for the best quality of life. Likewise, caretakers must not neglect their own well-being to provide the level of support their loved ones need. Through PREPARE, Rosario is helping breast cancer patients and their caretakers navigate the complex landscape of end-of-life care without removing their masks.
“We should focus on helping both patients and caretakers through this process, however possible,” Rosario said. “Obviously, we can’t always do that, but we should treat them as a unit. Because it’s a very rough and tedious process, and we need to support them any way we can.”
Did you know? Komen.org offers an End-of-Life Care fact sheet in Spanish, as well as a Co-Survivor Brochure in Spanish.
