At the ‘heart’ of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood

Abstract

The psychological impact of living with congenital heart disease in adulthood was explored using semi-structured interviews with seven adults. Participants described living with congenital heart disease as a constant and limiting presence, which impacts upon the relationship with self and others. Psychological and emotional reactions ranged from depression, shame, trauma, lack of control and an ongoing struggle with issues of uncertainty and life expectancy. Various coping strategies were identified such as denial and overcompensation. Participants reported that they were not psychologically supported by health professionals. Implications of findings are discussed with regard to service provision.