JMIR Publications

ABSTRACT

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 while they wait for an appointment with a clinician.

Objective:

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 (SCT) via NBS.

Methods:

NBSChat, a fully scripted (i.e, 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 semi-structured interviews with 11 adults; five clinicians who work with parents of infants identified with SCT through NBS and six parents of infants ≤12 months—using the critical incident technique and think-aloud tasks while using a prototype of NBSchat. Transcripts underwent thematic analysis. 250 parents of infants ≤12 months without abnormal NBS results completed the survey. Parents were asked to self-report emotional and attitudinal outcomes before and after interacting with NBSchat.

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 (e.g., provide relief and reduce stress). Key strengths included addressing an immediate health concern and offering reassurance. Results of the post-intervention survey indicated that, compared to pre-exposure scores, participants reported significantly lower negative emotions (mean 7.0 vs 5.8 out of 12; t-test, P<.001), higher positive emotions (mean 8.6 vs 7.8 out of 16; t-test, P<.001), and reduced uncertainty (mean 6.5 vs 5.5 out of 12; t-test, P<.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 outcomes of using the chatbot and its implementation in a pragmatic randomized controlled trial.