The Lived Experience of Parents Raising Children with Congenital Heart Disease: A Descriptive Phenomenological Approach

This study aimed to understand the experiences of Jordanian parents of children with congenital heart disease (CHD) and how this condition impacted their quality of life and their day-to-day life experiences. The study used a descriptive phenomenological design. Forty parents who had children being cared for in a paediatric cardiac ward were interviewed. Three interrelated experiential patterns emerged: parents' profound emotional changes after diagnosis, their continuing adaptation to challenges of caring for their child with social, spiritual and financial support, and the need for information to enhance their participation in care. Parenting a child with CHD is a significant life transition that is marked by uncertainty, emotional distress and adjustment. These experiences were influenced by family dynamics, spiritual coping, and financial constraints of the Jordanian healthcare system. The results suggest the need for family-focused education and psychosocial support to build parents' confidence and decrease uncertainty to improve their long-term ability to manage their parental roles.