| Abstract [eng] |
Relevance and aim of the study. Congenital orofacial clefts are common craniofacial anomalies resulting from impaired development of facial tissues during the early embryonic period. The etiology of these anomalies is multifactorial and includes both genetic and environmental factors; however, the exact mechanisms of their development are still not fully understood. In Lithuania, approximately 40 infants with congenital orofacial clefts are born each year. This anomaly causes significant difficulties from the first days of life, particularly those related to feeding and postoperative care. In addition to the challenges of physical care, this diagnosis also has a substantial impact on parents’ emotional well-being, causing stress, anxiety, and feelings of insufficient information. Therefore, adequate information provided by healthcare professionals and psychological support for the family are of great importance. The aim of the study was to evaluate the characteristics of early family-based care for children with congenital orofacial clefts by analyzing parents’ experiences, awareness, and feeding difficulties. Objectives. Evaluate parents’ awareness of their child’s congenital facial cleft during the prenatal and postnatal periods. Analyze the main feeding methods and the difficulties parents face during early care. Determine the impact of surgical treatment on the child’s feeding and its changes after surgery. Assess parents’ emotional experiences and their need for information and support. Methods. A quantitative cross-sectional study was conducted. Data were collected using an anonymous questionnaire survey with a questionnaire specifically designed for this study. The study included 39 parents of children with congenital facial clefts. Data analysis was performed using IBM SPSS Statistics 31.0. Descriptive statistics and non-parametric tests (Chi-square, Fisher’s exact test, Mann–Whitney U test, Spearman correlation) were applied. Results were considered statistically significant when p < 0.05. Results. The results of the study showed that two-thirds of parents learned about their child’s congenital facial cleft only after birth. Due to insufficient information provided by specialists, parents often independently searched for information online and in parent communities, which they considered more useful than consultations with specialists. More than half of the respondents indicated that they felt a lack of support from healthcare professionals. The study revealed significant feeding difficulties—most parents (82.1%) were unable to breastfeed their infants and therefore used specialized feeding bottles, most often chosen based on the experiences of other parents. It was found that surgical treatment improved the feeding process for the majority of children (80%); however, significant changes in weight gain were generally not observed. The greatest emotional distress for parents was caused by upcoming surgeries, uncertainty, and lack of information. The most important support needs identified by parents were reliable medical information and the opportunity to communicate with families who have had similar experiences. Conclusions. The results of the study revealed that parents’ awareness of congenital facial clefts during the prenatal period is insufficient, and information is most often sought independently. During early care, the use of specialized feeding devices predominates due to frequent breastfeeding difficulties and the need for alternative feeding methods. It was found that surgical treatment facilitates the feeding process; however, it does not always lead to a rapid improvement in weight gain. It also became evident that parents experience a significant emotional burden, with the greatest anxiety caused by upcoming surgeries and a lack of information. The most important sources of support are information provided in healthcare institutions and communication with parents who have had similar experiences. |
