The Challenges Encountered by Families of Children with Congenital Heart Defects: A Semantic Network Analysis

Purpose: The purpose of this study was to gain insights into the challenges encountered by families of children with congenital heart defects. Methods: This exploratory study utilized text mining and semantic network analysis methods. Data were collected from domestic portal sites and social networking services between 2020 and 2023 using the TEXTOM program. Keywords were related to the concepts of heart defects, children, and concerns or worries. Text mining was performed using TEXTOM, and semantic network analysis was conducted using UCINET 6.0. Results: In total, 2,083 keywords were extracted from 1,072 texts. Among these, "surgery," "hospital," and "echocardiogram" showed high frequency and centrality. Semantic network analysis indicated that families encountered challenges related to the needs for diverse information for caregiving, choosing healthcare institutions for the best outcome, challenges in disease management and uncertainty in recovery, and unmanageable treatment costs and financial assistance. Conclusion: Based on the findings of this study, it is recommended to initiate support programs for families at the point of diagnosis within the community. These programs should be tailored to the specific needs of each family, with the involvement of specialized personnel, and should continue throughout childhood. Furthermore, systemic improvements are necessary to ensure that families have access to reliable official resources to aid in the selection of appropriate healthcare institutions.