The psychosocial themes of children with a congenital heart defect.

Abstract

Children living with a congenital heart defect (CHD) carry the burden of a condition affecting their biological, psychological, and social functioning. Even though the physical heartbeats of these children might be inaudible and defective, their intra- and inter-personal 'stories in sound' need to be heard and understood. The aim of this research study was to explore these 'stories in sound' in children diagnosed with CHD. A qualitative, exploratory, descriptive study using thematic analysis was conducted. Semi-structured interviews were conducted with six boys and three girls between the ages of eight and fourteen years, who were diagnosed with CHD. The developmental psychopathology model (DPM) served as a conceptual framework. Five main themes emerged and were related to (i) the participants' understanding of their cardiac diagnoses; (ii) the participants' perceptions regarding their post-operative cardiac statuses; (iii) the participants' psychological experiences related to their cardiac statuses; (iv) the effects of living with CHD on their social functioning; and (v) a unique relationship to their chronic cardiac condition. Within each of these themes, thirteen subthemes were identified. The article concludes that an age-appropriate understanding of CHD and post-operative cardiac status is important, as children's perceptions have implications for their psychosocial experiences and acceptance of living with CHD. These children need comprehensive support from health care professionals.