A baby born during the periviable period of 22 to 25 weeks of pregnancy, has some chance of survival if life- support machines are started at birth. Even with use of life-support, most of these babies die and survivors often have significant disabilities. Medical experts are unsure if use of life-support is in the best interest of these babies; hence, practice guidelines recommend that parents make this decision. Yet parents hospitalized to deliver a periviable baby are unprepared for this role, as they lack knowledge of various treatments used for premature babies and the long-term effects. The National Institutes of Child Health and Human Development (NICHD) expert panel on medical management and counseling during the periviable period recommended what information parents need to make informed decisions. This includes knowledge of factors that can improve the chance of a good outcome such as choosing the right birth hospital, use of progesterone to prevent premature labor, and steroids to decrease neonatal complications. Half of the mothers who give premature birth have predisposing risk factors, for example a shortened cervix or a previous preterm birth. Our study of U.S. hospitals shows that most high-risk mothers do not get information regarding premature birth and its consequences until they are hospitalized to give premature birth. This ?just in time teaching,? when time is short and emotions run high, is not optimal. Many parents have a tough time understanding the complex information. The NICHD program announcement invites proposals to develop educational tools for families at risk for a periviable birth and address known needs in family counseling. Cognitive science evidence suggests that educational tools utilizing text, audio and visual media enhance learning. In consultation with parents who had experienced preterm birth, we developed the Preemie Prep for Parents (P3) mobile app. It includes information recommended for parents by NICHD.
The Aims are to determine the effect of the P3 app on 1) parental knowledge of prematurity and 2) preparedness for decision making compared to an electronic copy of the preterm birth parent handout published by the American College of Obstetrics and Gynecology (ACOG). One hundred-and-ten pregnant women (and partner) diagnosed with a preterm birth risk factor will be randomized at 16-21 weeks of pregnancy to receive the P3 app or the electronic ACOG handout via email. If pregnancy continues, parents will be tested on NICHD-recommended knowledge and preparedness for decision making during the periviable period (22-25 weeks) and again during two later prematurity stages (26- 30 weeks and 31-34 weeks). This developmental study brings together a team with expertise in neonatology, obstetrics, patient decision making, psychology, bioethics, health literacy, and app development. Findings will provide a foundation for future, multi-institutional implementation efforts to improve family counseling. With positive results, the Wisconsin Association for Perinatal Care will consider a state-wide initiative to utilize the P3 mobile app to provide prenatal prematurity education to parents at high risk of having a preterm birth.
Each year in the United States 500,000 newborns are born preterm and half of these preterm births are associated with prenatally identified maternal risk factors. Parents at-risk of preterm birth frequently do not receive anticipatory prematurity education during prenatal care. The proposed research is relevant to public health as it aims to improve preterm birth parent education and medical care, which is relevant to the NIH's mission that pertains to enhancing health and reducing the burden of disease.
