“Son muy enojados.” They’re very angry. It’s a phrase I’ve heard time and time again interviewing indigenous Guatemalan women about their experiences of maternal health care in government clinics and hospitals.
It’s meant different things to different women. For Leticia, whose first language is Kaqchikel Mayan, “they’re very angry” referred to the hospital staff who threw away her traditional indigenous hand-woven clothing and scolded her in Spanish for crying out in pain during labor. For Mariel, it was about the hospital security guards who denied her entry when she began to experience vaginal bleeding during her second pregnancy; she ultimately miscarried at home. For twenty-nine year-old Telma, the phrase referred to the medical team that badgered her to get her tubes tied as she was rushed to an emergent C-section, and, despite her refusal, performed the tubal ligation after delivering her baby.
Reducing maternal mortality has been a public health priority in Guatemala for many decades. The indigenous Mayan population, which faces a maternal mortality rate two to three times higher than the general population, has been the focus of many initiatives to promote safe motherhood. Indeed, much has been written about the structural barriers Mayan women face to prenatal care and hospital delivery as well as the cultural norms that promote home birth and discourage referrals. Against a backdrop of severe resource limitations–an underfunded public system with constant stockouts, which requires patients to buy gloves and antibiotics and round up family members to donate blood before a surgery–poor outcomes are all but guaranteed. Stories of obstetric violence and disrespect and abuse in maternity care, such as Leticia’s, Mariel’s, and Telma’s, circulate, discouraging women from prenatal services and high-risk obstetric care.
But there is a new story to be told.
The NGO I work with in Guatemala, Wuqu’ Kawoq | Maya Health Alliance, has been pioneering a new model to bridge many of the gaps to safe motherhood: obstetric care navigation.
Care navigation is a health care delivery strategy that employs trained patient navigators or advocates to support patients through a fragmented care continuum. To date, the concept has largely been used in cancer care in high-income settings.
In 2010, our organization began a Complex Care Program to support poor rural Maya people through referrals to urban specialty hospitals for cancer and chronic disease care in Guatemala. Recognizing the barriers that indigenous people face in navigating hospital bureaucracy and discrimination, we trained care navigators who accompany patients to hospital appointments, interface with hospital staff to coordinate the logistics of patient care, interpret for patients and providers between Mayan languages and Spanish, and act as advocates to ensure that patients advance through the diagnostic and treatment continuum.
We have recently expanded this work into emergency obstetric referrals. My colleagues Kirsten Austad, Boris Martinez and Michel Juarez, a team of global health physician-researchers, are leading this effort in the western highlands of Guatemala with support from Grand Challenges Canada. Wuqu’ Kawoq works with a network of community-based lay midwives to identify women with high-risk pregnancies and has trained care navigators to support these women through referrals to government health facilities for continued care and delivery. Care navigators provide emotional and moral support for pregnant women, improve communication with biomedical providers, advocate for patients’ rights, and facilitate out-of-hospital purchases of medications and supplies that otherwise typically delay emergency obstetric care. At the same time, Wuqu’ Kawoq works closely with government hospital leadership and administration to ensure the success of the program.
For more information, check out our recently published article.