Parental knowledge and barriers to cleft lip and palate care: a cross-cultural study from the Middle East and South Asia

TL;DR

This study explores how parents in the Middle East and South Asia understand and access care for children with cleft lip and palate, highlighting cultural and socioeconomic barriers.

Contribution

The study provides cross-cultural insights into parental knowledge and barriers to CLP care in underrepresented regions.

Findings

Most parents sought medical attention promptly after noticing CLP, but few recognized it as a syndrome or thought it was preventable.

Travel and work-related barriers significantly impacted access to care, especially in lower socioeconomic groups.

Higher socioeconomic status and Arab Gulf region were associated with better knowledge and fewer barriers to CLP care.

Abstract

Orofacial clefts, including cleft lip and/or palate (CLP), are common congenital anomalies that can cause feeding difficulties, speech articulation issues, dental problems, and ear complications. Timely treatment is essential to improve the quality of life for affected children. This study investigates parental knowledge, perceptions, and barriers to care for children with CLP across Saudi Arabia, Jordan, Egypt, and Pakistan. It explores cultural and systemic factors influencing healthcare-seeking behavior and offers recommendations to reduce cross-cultural disparities in awareness and access to care.

A cross-sectional online survey targeted parents of children with CLP, recruited through hospital records and community support centers in the four countries. The questionnaire collected data on sociodemographics, parental knowledge, attitudes, practices regarding CLP, and barriers to accessing care.

A total of 505 parents participated, representing diverse regions of the Arab Gulf, North Africa, and South Asia. Most parents (91.9%) sought medical attention promptly after noticing CLP. However, knowledge varied: while many parents understood the medical nature of CLP, few recognized it as a syndrome or thought it was preventable. Travel and appointment barriers were prevalent; 70.3% traveled long distances for care, and 37.4% missed appointments due to work commitments.

The findings reveal regional disparities in parental knowledge and access to care. Parents from higher socioeconomic backgrounds and the Arab Gulf reported better understanding and fewer barriers. Improving health education, transportation access, and community-based services is vital to support families and enhance CLP management.