The Role of Perceived Health-Related Information Adequacy in the Experiences of Parents of Children With Complex Vascular Anomalies

Abstract

Parents of children with complex vascular anomalies (VAs) struggle to locate credible information. We explored whether their perceptions of the adequacy of VA-related information were associated with caregiver burden, anxiety, child health, and their ability to navigate the healthcare system and seek information. We also examined how their perceptions of clinician knowledge and communication affect their perceptions of information adequacy. A total of 86 parents completed our online survey. Perceived information adequacy was associated with lower anxiety, greater ability to navigate the healthcare system, greater clinician knowledge, and better clinician communication. These data identify important communication barriers that future research studies should address.