Parental Perspectives and Experiences of Newborn Screening Program in a Tertiary Care Teaching Hospital: A Cross-sectional Study

Abstract

Background Newborn screening (NBS) programs are employed to detect various disorders with the aim of early identification and scope for early intervention. They are increasingly being accepted by parents in many countries. Aim The aim of this study is to know about the awareness of NBS programs among parents and gain knowledge about their perspectives on and experiences with the screening program. Settings and Design This is a cross-sectional study done over a period of three months among parents of newborns who underwent the NBS program in a tertiary care teaching center in South India. Material and Methods The demographic details, awareness of parents regarding NBS, and their experiences during the procedure were recorded using a pretested and piloted questionnaire, and the results were analyzed. Statistical Analysis Used Frequencies and percentages were used for descriptive statistics. Chi-square test or Fisher’s exact test was used for finding an association between nominal variables. Results We found that the awareness about NBS programs is very low 14% (95% CI: 8.5–22.1) among parents in the studied population. There are multiple concerns among parents such as cost involved, the diseases screened, the method of sampling, interpretation of results, and further management options. Conclusion In spite of high literacy and good socioeconomic status, awareness is low among parents about the NBS program.