The Lived Experiences of Parents of Children Diagnosed With Congenital Heart Disease: Challenges, Emotional Responses, and Sources of Strength

AIMS: This study explored the lived experiences, emotional responses, and caregiving challenges of parents of children under five years old diagnosed with congenital heart disease. DESIGN: An exploratory descriptive qualitative design was employed to gain in-depth insight into parents' caregiving experiences, emotional responses and challenges. METHODS: Data were collected between January and February 2022. Ten parents (six mothers and four fathers) of children younger than 5 years diagnosed with congenital heart disease were purposively recruited from two public hospitals in Jordan. Semi-structured interviews were conducted either face-to-face or via smartphone video call, using a flexible interview guide. Data were analysed thematically following Braun and Clarke's six-step process. Reporting adhered to COREQ guidelines. RESULTS: Three overarching themes emerged: (1) The immense burden of care, including physical exhaustion, nutritional challenges, financial strain, and difficulties navigating healthcare; (2) Life as a journey on a thorny road, encompassing emotional and psychological struggles such as intense negative emotions, protective caregiving, disturbed family dynamics, and societal stigma; and (3) Strength amid challenges, highlighting spirituality, trust in divine will, and faith-inspired charitable acts as vital sources of resilience. CONCLUSION: Parents face a heavy caregiving burden, emotional and social challenges, and financial and healthcare barriers. Yet, spirituality and faith serve as vital sources of resilience. Supporting parents requires addressing these practical demands, emotional struggles, and coping resources in a holistic way. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Healthcare professionals should offer tailored emotional support, enhance communication, and receive training on the psychosocial impact of caring for a child with congenital heart disease. Family-centred care and accessible educational resources are essential for enhancing outcomes for children and their families. PATIENT OR PUBLIC CONTRIBUTION: Patients and members of the public were not directly involved in the design or conduct of this study. REPORTING METHOD: This study adhered to the relevant EQUATOR reporting guidelines, specifically the Consolidated Criteria for Reporting Qualitative Research (COREQ). IMPACT: What problem did the study address? The study addressed the limited understanding of the emotional, social, and caregiving burdens experienced by parents of young children with congenital heart disease, particularly within local cultural and healthcare contexts. What were the main findings? Parents faced significant physical, emotional, financial, and healthcare-navigation challenges, alongside social stigma and family strain. Spirituality and faith emerged as key sources of resilience and coping. Where and on whom will the research have an impact? The findings may inform paediatric and cardiology practice by helping nurses and other healthcare professionals provide family-centred, culturally sensitive emotional and educational support to affected children and their families.