170 - Regrets in Parents of Children with a Surgical Congenital Cardiac Anomaly

Publication Number: 170.6271

Lauren Capaci, Nationwide Children's Hospital, Columbus, OH, United States; Magdalena Jaworski, Université de Montréal, Montreal, PQ, Canada; Katharine Callahan, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Chloe Barsoum, McGill University Faculty of Medicine and Health Sciences, Montreal, PQ, Canada; Karolane Maltais, CHU Sainte-Justine, Montréal, PQ, Canada; ANNIE Janvier, University of Montreal, Montréal, PQ, Canada; Thuy Mai Luu, Centre Hospitalier Universitaire Sainte-Justine, Montreal, PQ, Canada; Carl Backes, Nationwide Children's Hospital, Col, OH, United States; Rebecca A. Dorner, Sharp Mary Birch Hospital for Women & Newborns, San Diego, CA, United States

Background: Congenital heart disease (CHD) needing surgery is common in pediatrics. Knowledge about the parent experience of CHD is limited.

Objective: Explore decisional regrets in parents of children with CHD.

Design/Methods: Parents of children 1-4 years old with surgical CHD that presented for cardiology clinic follow-up at a single center were interviewed. They were asked: "Knowing what you know now, is there anything you would have done differently?” Answers were analyzed using mixed methods.

Results: 52 parents were interviewed; 60% of parents had no regrets or only positive comments, and 40% of parents reported regrets. Parents with regrets invoked 3 main themes: regrets regarding care, communication, and coping. (1) 33% expressed doubts regarding both cardiac and non-cardiac clinical care: “Now he has the PLE [protein-losing enteropathy], likely related to the Fontan. If we knew that had been a side effect, should we have held off on the surgery for a little? It's hard to say what other effects could've been.” (2) 24% expressed regrets about communication both to and from clinicians, some wishing they engaged more, while others wished they had advocated more for their child: “I would have tried to build relationships with the hospital staff more intentionally, and become more invested in that, because I didn't realize at first how much of a part of our life, at times, those people are,” and “With the single ventricle & the dietary team[…]- she's not gaining weight- but it was all about, what she's doing with intake as far as oral fluids. And it was kind of to the point, like, okay we should be starting solids. But no- we had to hold off on solids. So trusting our judgement with that.” (3) 24% of parents reported they wished they had managed their emotions differently: “I'd like to say not worry as much […] I think we were given a very bleak picture when we were first diagnosed […] and, psychologically, that led me to a tailspin of contacting every research institution in the country. That was very stressful. I wish I would've been given more positive cases- there are kids in their 30s living with this.” None of the parents reported regretting any life-or-death decisions made.

Conclusion(s): The majority of parents of children with surgical CHD reported no regrets. When present, regrets were multifactorial regarding their child’s clinical care, with many additionally noting the impact of this diagnosis on their family structure and difficulty coping with emotions. Clinical awareness of these findings can help clinicians better support parents and proactively address concerns.