From Surviving to Thriving - Parental Experiences of Hospitalised Infants with Congenital Heart Disease Undergoing Cardiac Surgery: A Qualitative Synthesis

Problem: Congenital heart disease (CHD) is the most common congenital abnormality in infants and over one third of these infants will require surgical intervention in the neonatal period. This qualitative synthesis aimed to explore parental experiences of surgery and hospitalisation in the intensive care environment for the treatment of their infant's CHD in the first year of life in order to inform practice.

Eligibility Criteria: Qualitative primary research and qualitative elements of mixed methods studies published in English between January 2009 and February 2019 were eligible if they addressed the experiences and perspectives of parents whose infants had CHD undergoing cardiac surgery in the first year of life.

Sample: Three hundred and forty-nine papers were screened. Six papers, with three of them from the same larger study, were included.

Results: Five themes were developed from thematic synthesis. They are (1) intense conflicting emotions from heartbreak to joy, (2) the helplessness and uncertainty of waiting, (3) making sense of it all, (4) the power of relationships, and (5) parenting despite the challenges.

Conclusion: Parents experienced intense and fluctuating emotions, and found ways of coping. The integral role of healthcare professionals/nurses during this period was also evident.

Implications: Healthcare professionals/nurses have the potential to positively impact the care and outcomes for this growing population of infants with CHD and their families, helping them to thrive. More research is needed with longitudinal and multi-centred studies and in middle and low income counties to broaden our understanding of this topic.