M. E. Danko1, J. R. Robinson1,2, R. K. Skeens3, G. P. Jackson1,2 1Vanderbilt University Medical Center,Department Of Pediatric Surgery,Nashville, TN, USA 2Vanderbilt University Medical Center,Department Of Biomedical Informatics,Nashville, TN, USA 3Vanderbilt University Medical Center,Department Of Pediatrics, Division Of Neonatology,Nashville, TN, USA
Introduction: Pediatric surgeons are asked to address challenging problems in newborn infants. Congenital anomalies are often diagnosed prenatally, providing an opportunity for early parental education and decision-making. Prior research has shown that many pregnant women and caregivers have unanswered questions during pregnancy. We examined health-related needs of pregnant women and caregivers with prenatal surgical diagnoses to design better educational resources for this population.
Methods: We enrolled English and Spanish speaking adult pregnant women and caregivers in a mixed-methods study of health-related needs during pregnancy. Pregnant women < 36 weeks gestational age were recruited from an advanced maternal-fetal center and group prenatal care practice. Pregnant women could invite caregivers (i.e., anyone significantly involved in the care of mother or baby) to participate. Study subjects completed sociodemographic surveys and semi-structured interviews. Needs were categorized by two research team members by semantic type using a validated consumer health needs taxonomy with four main categories (i.e., informational, logistical, medical, and social/emotional) and the degree to which they were met (i.e., met, partially met, or unmet).
Results: One hundred participants (71 pregnant women, 29 caregivers) were enrolled in the study; 29 (20 pregnant women, 9 caregivers) had fetuses with surgical diagnoses, which included congenital heart disease (10), spina bifida (7), gastroschisis (6), hydrocephalus (5), cleft lip/palate (4), omphalocele (1), and congenital diaphragmatic hernia (1). Health-related needs data are shown in Table 1. Participants expressed 323 needs, 240 from pregnant women and 83 from caregivers. The most common need subtype was informational needs about specific therapeutic interventions (31 needs, 9.6%). A total of 101 needs (31.3%) were unmet, with the majority in the informational category (57 needs, 56.4%). The most common specific subtype of unmet needs for all participants was logistical, usually questions pertaining to the healthcare facilities, policies or personnel. The most common subtype of unmet needs was the need for emotional support in pregnant women and logistical needs about healthcare facilities, policies, or personnel for caregivers.
Conclusion: Despite receiving care in advanced maternal fetal care settings, pregnant women and caregivers with surgical fetal diagnoses have significant unmet health-related needs during the pregnancy. Pregnant women and their caregivers have differing types of health-related needs. Some unmet needs, such as questions about facilities or details of surgical procedures, can be easily addressed, and meeting them may improve the perinatal experience.
