Facilitators and Barriers Influencing Parental Acceptance of Newborn Screening in Pakistan: A Multicenter Study
Farah Shams Abbasi, Nazia Shamim, Farhana Shams Abbasi, Suneeta Namdave, Hafsa Zaheer, Warda Khalid, Hafsa MajidNewborn screening (NBS) is an effective public health intervention for the early detection of treatable congenital disorders, which may reduce the long-term healthcare burden and yield potential cost for families. Despite its proven benefits, NBS uptake remains limited in Pakistan, and little is known about the factors influencing parental acceptance in secondary care settings. This study aimed primarily to determine parental acceptance and refusal rates for newborn screening, and secondarily to explore parental perceptions, facilitators, and barriers to its uptake. A prospective cross-sectional observational study was conducted at the Aga Khan University Hospital secondary care facilities in Karachi, Pakistan. Data was collected using a structured, expert-reviewed, 5-point Likert response scale questionnaire. Descriptive statistics were used to summarize participant characteristics and responses. Of 179 enrolled parents, 147 (82.1%) accepted newborn screening, while 32 (17.9%) refused. Over a period of 6 months following pediatric counseling for all refusing parents, screening was successfully completed in 154 newborns (86.0%). Healthcare provider counseling, physician recommendation, and improved parental knowledge were the most commonly reported facilitators of acceptance, whereas cost, travel distance, waiting times, and concerns regarding screening outcomes were the most commonly reported barriers. Parental acceptance of newborn screening is influenced by awareness, education, and effective counseling. Strengthening parental education, improving communication by healthcare providers, and ensuring equitable access by addressing financial and policy barriers can support the expansion of sustainable national screening programs in low- and middle-income countries.