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Volunteer cancer-care "guides" lead patients from fear to hope

October 13, 2016 by Tara Hayes Constant

In Peru, a new approach to delivering breast cancer care shows potential to save thousands of women’s lives.

A close-up of a smiling woman.

PATH and its partners are developing a patient-navigation experience in Peru to complement existing community education and screening programs. Photo: PATH/Mike Wang.

In the communities where I’ve worked, my role as an anthropologist has been to study, reveal, and understand the barriers that may keep people from receiving timely and quality health care. What worries or concerns them? What motivates them to seek health care? What are the challenges they confront and how do they overcome them? Then we look for ways to support systems that reduce barriers and increase the availability of services.

But services don’t work if patients are lost to follow-up.

The experience of one woman made a strong impression on me. “Martha” (whose name I changed) was only 35 when she attended her first breast cancer screening campaign. She was an ama de casa (homemaker) with four children and a husband working in the rice fields of northern coastal Peru.

Martha received a clinical breast exam from a trained professional midwife at her local health clinic as part of a PATH-supported breast health program. When a lump was found, she was referred to her nearby community hospital for a minimally invasive biopsy method called “fine-needle aspiration.” The biopsy was sent to the nearest cancer hospital, several hours away in Trujillo, where it was examined by a specially trained pathologist.

The results came back as a potential positive diagnosis for breast cancer.

Two women in lab coats work in a clinical setting behind a grated open window.

Biopsies must be sent to hospitals to be interpreted by a pathologist. The findings determine the next steps of a woman’s journey in breast cancer treatment. Photo: PATH/Mike Wang.

Working to fill system gaps

To establish a treatment plan, Martha made the two-hour bus trip to the cancer hospital, alone, to meet with an oncologist. She qualified for free health care coverage under the national health insurance program. At this point, it looked like the PATH-supported systems improvements had worked!

But Martha didn’t go back to the hospital. It is unclear what Martha experienced while she was at the hospital—who she met, what crossed her mind, or what she was told by people in the hospital or elsewhere. What is known is that Martha left for home and did not return to continue her treatment.

A midwife and I visited Martha and her husband at their home, but Martha had little to say about that first visit to the cancer hospital. She did listen closely as we told her about the services she could access at the cancer hospital, the free clinical care, and the availability of support groups for women like her. I was so impressed by the midwife and her persistence in caring for her patient. It was the first time I knew I wanted to do something similar, to use anthropology to understand and be a nurse to act.

Close-up of a woman's folded hands.

Photo: PATH/Mike Wang.

Fast forward one year

It took a year of supportive home visits from various health care providers for Martha to return to the hospital and start her treatment. When I last heard an update, she was feeling better about her prospects.

But still I wondered, what would have happened had there been someone at the hospital the first time she visited, to help her through the process and understand what was happening?

While there were likely many factors relevant to Martha’s choice after her first visit, we had to ask ourselves, what did or did not happen to support or validate her substantial effort? She clearly had the motivation and ability to get there under her own power once before. We wanted to figure out how to help women like Martha believe that continuing treatment was a possible option, while recognizing and addressing the very real challenges they face.

Experiences like Martha’s are not uncommon in Peru

Six women in blue hospital gowns flank a woman wearing a white uniform.

A trained patient navigator accompanies women who were identified with breast abnormalities during a breast screening campaign. Photo: PATH/Tara Hayes Constant.

Today, nearly 1.7 million women develop breast cancer each year worldwide, and more than half a million die from it annually. Peru alone, with its population of 30 million people, has 3,000 new cases each year and more than 1,200 deaths.

In Peru, patients with cancer face a fragmented health care system and may be overwhelmed by all that is required of them to access lifesaving services, despite the fact that government-sponsored treatment is guaranteed for low-income citizens.

To address this, the Community-based Program for Breast Health (CPBH) or Programa Comunitario de Salud Mamaria developed a patient navigation program.

Patient navigation is an intervention designed to provide one-to-one attention to help patients overcome financial concerns, communication and information gaps, medical system challenges, and emotional or other personal barriers to care.

The concept isn’t new. Dr. Harold Freeman, a physician in Harlem, recognized that African American women had worse breast cancer outcomes compared to their white counterparts; disparities that could be traced back to poorer access to timely and appropriate care. Patient navigators help address these health disparities by guiding women through the health care system.

Addressing a need

A group of people meet around a table, talking and reviewing paperwork.

Volunteer members of a community action board discuss elements of the patient navigation training curriculum. Photo: PATH/Tara Hayes Constant.

At PATH, we often incorporate existing solutions in new and innovative ways. Patient navigation really is a flexible tool, one that can be adapted for both community and clinical settings, within different local contexts. The goal is to help people access the care they need, when they need it.

In two cancer hospitals in Peru, our PATH teams worked with volunteers to develop and implement patient training materials. Volunteers learned about the structure and function of the health care system, institutional procedures, and patient flow. They also learned how to register for government-funded insurance, the basics of breast cancer biology, methods of communication between providers and families, and local social resources for cancer patients and their families.

Through this program, volunteers will help guide patients through the complex cancer care system, not as medical experts, but as lay experts. To date, more than 150 volunteers in Peru are involved in patient navigation trainings.

“Patient navigation really is a flexible tool, one that can be adapted for both community and clinical settings, within different local contexts.”
— Tara Hayes-Constant

From the beginning, the development of patient navigation services in Peru has been supported by the Susan G. Komen Foundation. This year, the program will include registered nurses. Through a hospital-based “School for Caregivers,” we’ll train nurses on how to educate patient caregivers (usually family members) on which pain management services are available as well as methods for in-home palliative care.

More recently, support from The Pfizer Foundation will allow PATH to dramatically scale up the entire CPBH Peru model to nine additional health networks. This includes bringing the original patient navigation curriculum to community-based health volunteers or promotores. The promotores will be able to guide women to screening services, and also help them if the screening comes back positive. What began in one small health network in northern Peru, is now expanding as part of a comprehensive early detection program to reach more than tens of thousands of women across La Libertad region.

While medical services are absolutely essential for tackling breast cancer, and strengthened partnership can make a huge difference, I know—as a nurse and an anthropologist—that the most important partnership is the one we build with patients and their families. Helping them navigate this difficult episode in their lives can truly make the difference between life and death, as well as between fear and hope.

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