Linda Squiers1, Shea Brown2, Kimberlea Hauser3, Molly Lynch4, Katherine Treiman4, Kara Polen5, Jacqueline Amoozegar4, Rosanna Quiroz4, Van Tong5, Lisa Waddell6, Suzanne Gilboa5. 1. Center for Communication Science, RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. lsquiers@rti.org. 2. Virginia Department of Health, Harrisburg, PA, USA. 3. Pennsylvania Department of Health, Harrisburg, USA. 4. Center for Communication Science, RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. 5. Division of Birth Defects and Infant Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA. 6. March of Dimes, Arlington, VA, USA.
Abstract
OBJECTIVES: To understand the information needs and experiences with health care and social support among women with confirmed or possible Zika virus infection during pregnancy. METHODS: We conducted in-depth interviews with 18 women whose pregnancies were part of surveillance efforts in two states, Pennsylvania and Virginia. Using a semi-structured guide available in English and Spanish, we asked women about their experiences. We conducted a thematic analysis using NVivo 11. RESULTS: Only one participant reported that her infant had been diagnosed with health problems related to congenital Zika virus infection. Most participants said they received the information they needed about Zika virus and their infant's medical care. Most participants primarily spoke Spanish and described satisfactory experiences communicating with providers, either using a mix of Spanish and English or using an interpreter. Coordination of care and clear communication among different providers was a key factor in participants' satisfaction with health care received. Participants noted high levels of stress around the uncertainty associated with Zika virus exposure during pregnancy. CONCLUSIONS FOR PRACTICE: Although participants reported satisfaction with care, they also reported high levels of anxiety and challenges coping with the uncertainties along their journeys. Study findings support the need for guidance for providers about how to talk with women about Zika virus infection during pregnancy and specifically how to discuss the uncertainties about diagnosis and outcomes.
OBJECTIVES: To understand the information needs and experiences with health care and social support among women with confirmed or possible Zika virus infection during pregnancy. METHODS: We conducted in-depth interviews with 18 women whose pregnancies were part of surveillance efforts in two states, Pennsylvania and Virginia. Using a semi-structured guide available in English and Spanish, we asked women about their experiences. We conducted a thematic analysis using NVivo 11. RESULTS: Only one participant reported that her infant had been diagnosed with health problems related to congenital Zika virus infection. Most participants said they received the information they needed about Zika virus and their infant's medical care. Most participants primarily spoke Spanish and described satisfactory experiences communicating with providers, either using a mix of Spanish and English or using an interpreter. Coordination of care and clear communication among different providers was a key factor in participants' satisfaction with health care received. Participants noted high levels of stress around the uncertainty associated with Zika virus exposure during pregnancy. CONCLUSIONS FOR PRACTICE: Although participants reported satisfaction with care, they also reported high levels of anxiety and challenges coping with the uncertainties along their journeys. Study findings support the need for guidance for providers about how to talk with women about Zika virus infection during pregnancy and specifically how to discuss the uncertainties about diagnosis and outcomes.