Latina women face many linguistic, cultural and financial barriers to health care, and this trend continues into survivorship, according to a recent study published in Public Health Nursing
Through support groups, health fairs and promotoras (lay Hispanic/Latina community members who receive specialized training to provide basic health education in the community), researchers at Oregon State University (OSU) recruited 74 Latina women who had survived breast cancer. The survivors were variable in terms of the stage of their cancer, time since their diagnosis and English proficiency.
The survivors then participated in semi-structured focus groups, using a question guide that had been put together by academic researchers and community partners. The goal was to understand the experiences of these survivors as well as their needs. The questionnaire examined each survivor’s experience with follow-up care, barriers and the meaning associated with breast cancer survivorship.
Optimal survivorship care should handle recurrence, new cancer and the late effects of cancer treatment, as well as all medical, mood and social issues that might come up for the survivors.
The researchers found that the gaps in Latina survivorship care existed when it came to finances, continuity of care, information provided and symptom management.
Carolyn Mendez-Luck, Ph.D., one of the authors on the study, assistant professor at OSU’s College of Public Health and Human Sciences said, “Many survivors experience persisting symptoms including fatigue, pain, depression and sleep disturbance, but until recent years, survivorship has been relatively neglected in education, clinical practice and research.”
The patients also expressed anxiety and confusion when it came to future surveillance and treatment once their primary care had finished. They were unsure of who was in charge of future treatment, what the schedule of follow-up meetings was supposed to be, what the recommended self-care was and what they could expect their physical and mental well-being to feel like.
“Among the women in our focus groups, survivorship care plans were scarce,” Mendez-Luck said. “The vast majority of participants reported never having heard of them, or associated them with a completely different meaning - making a plan for how their families could carry on after they were gone.”
The women also had different connotations of the word “survivor” – some negative, some positive. “Negative perceptions included feelings that being identified as a cancer survivor was depressing, victimizing and stigmatizing,” Mendez-Luck said. “Also, that thinking about the cancer could potentially contribute to an increased likelihood of a recurrence, either by ‘tempting fate’ or from the stress brought on by negative thinking.” Mendez-Luck also noted that the positive views included feeling special, strong and blessed by God, as if they had a special purpose for living which often included a mission to serve others.
From this research, the authors hope to inform the design of future programs. Future work can develop interventions that address the unmet needs identified by the Latina survivors themselves. Recommendations that the researchers make are “enhancing peer and professional support services for patients, family and caregivers.” They also believe that the implementation of survivorship care plans need better promotion.
“A survivorship care plan is meant to be this living document for you and your care providers, a document a patient can follow through this entire process of what’s going on with the cancer and what she can do to stay healthy and reduce the chances that the cancer will return,” said Mendez-Luck. “It makes the patient truly a partner in her own care with health providers. But that’s not happening, clearly, at least not for these women. There’s an enormous opportunity there for improvement.”