A Chatbot to Meet Parents’ Information Needs for Sickle Cell Trait Newborn Screening Results: Multiple Methods Formative Study

Background: Newborn screening (NBS), a mandated public health intervention, allows the identification of babies with potentially life-threatening disorders and facilitates disease diagnosis and management before the onset of symptoms. While NBS saves lives, the process can be fraught with anxiety and unanswered questions from parents or guardians of newborns, especially as they wait for an appointment with a clinician. Objective: This study aimed to describe the development and testing of an educational chatbot (NBSchat) to address the emotional support and information needs of parents of newborns identified with sickle cell trait via NBS. Methods: NBSchat, a fully scripted (ie, rule-based) chatbot, was developed by a multidisciplinary team and evaluated through a sequential multiple methods study, including interviews and a survey. To inform chatbot design, we conducted semistructured interviews with 11 adults—5 clinicians who work with parents of infants identified with sickle cell trait through NBS and 6 parents of infants aged 12 months or less—using the critical incident technique and think-aloud tasks while using a prototype of NBSchat. Transcripts underwent thematic analysis. In a survey, 250 parents of infants aged 12 months or less without abnormal NBS results were shown a mock newborn screening result letter and then interacted with NBSchat, after which they self-reported emotional and attitudinal outcomes before and after the simulated exposure. Results: Feedback from interviews confirmed that parents are distressed by trait results and actively seek information and reassurance. Thematic analysis indicated that NBSchat provided reliable, accurate information that parents wanted and had the potential to reduce negative emotions (eg, provide relief and reduce stress). Key strengths included addressing an immediate health concern and offering reassurance. The results of the postintervention survey indicated that, compared to pre-exposure scores, participants reported significantly lower negative emotions (mean 7.0 [SD 3.2] vs 5.8 [SD 3.2] out of 12; mean difference −1.2, 95% CI −1.57 to −0.83; <.001), improved positive emotions (reflected by a decrease in the reverse-coded positive emotion score; mean 8.6 [SD 4.2] vs 7.8 [SD 4] out of 16; mean difference −0.8, 95% CI −1.27 to −0.37; <.001), and reduced uncertainty (mean 6.5 [SD 3] vs 5.5 [SD 3.4] out of 12; mean difference −1, 95% CI −1.42 to −0.58; <.001). Parents noted that NBSchat provided immediate reassurance and was convenient to access. They further reported that the predefined, structured questions in the script helped guide their learning and understanding. Conclusions: Overall, participants who interacted with NBSchat found it to be acceptable, with improved emotional measures after its use. Future research will investigate the outcomes of using the chatbot and its implementation in a pragmatic randomized controlled trial.