The psychosocial themes of children with a congenital heart defect

[摘要] English: Children living with a congenital heart defect (CHD) carry the burden of a condition affecting their biological, psychological, and social functioning. The extent of influence depends on the unique and complex relationship between a wide range of developmental domains, outcomes, and life course trajectories. Children with CHDs are more vulnerable to experience psychological difficulties. Although there is a sound body of international research pertaining to the psychosocial themes of children with a CHD, South African research on this topic is non-existent. The aim of this study was to explore and describe the psychosocial themes of children with a CHD in the South African context.Semi-structured interviews were conducted with nine children (six males and three females) in the middle childhood developmental stage between the ages of eight and fourteen years. All had a confirmed congenital cardiac lesion and received treatment for their condition. They resided in three geographical locations, namely the Free State, the Northern Cape, and Lesotho. Data were analysed by means of thematic analyses. To gain a comprehensive understanding of children with a CHD, psychosocial themes were contextualised in terms of the developmental psychopathology model.Five main themes and thirteen subthemes emerged from the participants' narratives. The five main themes related to (a) understanding of cardiac status (i.e., 'I have a heart); (b) perceptions regarding post-operative cardiac status (i.e., 'Talking about my heart); (c) awareness of psychological experiences related to cardiac status (i.e., 'Talking from my heart); (d) social functioning and cardiac status (i.e., 'Heart to heart); and (e) understanding of cardiac status as a chronic condition with long-term psychological effects (i.e., 'Attached to my heart). Findings of this sample of children with a cardiac condition were that they have (a) an age-appropriate understanding of their cardiac conditions; (b) well-developed episodic memory, which holds inherent advantages for future intrapersonal management of the condition; (c) well-developed cognitive regulation; (d) a combination of misperceptions regarding post-operative cardiac status and more realistic outlooks on their post-cardiac status; (e) awareness of psychological experiences related to their cardiac statuses, including anxiety, fear, loneliness, sadness, anger, and resilience; (f) negative (e.g., peer rejection) and positive (e.g., support from caregivers, siblings, and teachers) experiences in the functional social domain; and (g) an understanding of the unique attachment to their hearts; i.e., a chronic cardiac condition.The clinical implications of the findings highlight that health care professionals and researchers need input from children with CHDs to enhance their professional understanding of the intra- and interpersonal experiences of these children and contribute to the provision of comprehensive high-quality health care. Recommendations regarding future research on CHD include considering sample size, type of cardiac conditions, and the question of quantitative versus qualitative research.This study emphasises the importance of holistic management of paediatric cardiac conditions on a biopsychosocial level and serves as an aide-mémoire that a child with a CHD becomes an adult with a CHD.

[发布机构] University of the Free State