Family Psychosocial Care Model for Congenital Heart Disease: A Crowdsourced Study (Pilot Year 4)
Erica Sood, Nemours (PI); Erin Riegel, Mended Little Hearts of Delaware; Allison Karpyn, UD (Co-I); Abigail C Demianczyk, Childrens Hospital of Philadelphia (Co-I); Amanda Shillingford, Nemours (Co-I); Anne E Kazak, Nemours (Mentor); Colette Gramszlo, Nemours (Mentor)
What we wanted to learn and why it matters
The goal of this study was to understand the types of emotional stress parents feel and the kinds of supports that parents have and need, when caring for a young child diagnosed with Congenital Heart Disease (CHD). CHD is the most common birth defect in the world and 9 in every 1,000 children are born with it. Children often require surgery and many doctor and hospital visits which can place substantial stress on caregivers. The results of this study are important because they will be used to develop new psychological interventions at Nemours, make new recommendations for how doctors and other staff speak to patients and their parents, and help to create new support group strategies to help parents maintain their own mental health.
What we did and learned
The study asked 79 caregivers to anonymously use a private social networking site to respond to a series of open-ended questions which asked about their experiences and needs related to caring for their children and themselves while their child was hospitalized or receiving care for CHD. The study found that the way that hospitals communicate information, where and when, makes a big difference for parent stress. For example, parents need care instructions related to discharge not in the hours right before discharge but sooner, so they have time to think about the process, how to set up their home to care for the child, and time to ask any questions. Parents also shared important information about how the condition impacts their expectations as parents, and what the hospital could do to help allow them to still feel like an active parent, even though the child requires so much support from the health care system. Parents want to establish a bond with their baby, they want to be a clear parent to the child in terms of “normal” parenting decisions, and they also need support to cope with their fears and uncertainties for their child’s development.
To read more about this study
Gramszlo, C., Karpyn, A., Christofferson, J., McWhorter, L., Demianczyk, A., Lihn, S., . . . Sood, E. (2020). Supporting parenting during infant hospitalization for CHD. Cardiology in the Young, 30(10), 1422-1428. doi:10.1017/S1047951120002139. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6037564/
Sood, E., Karpyn, A., Demianczyk, A. C., Ryan, J., Delaplane, E. A., Neely, T., Frazier, A. H., & Kazak, A. E. (2018). Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care. Pediatric critical care medicine. 19(7), 626–634. https://doi.org/10.1097/PCC.0000000000001528.
Gramszlo C, Karpyn A, Demianczyk AC, Shillingford A, Riegel E, Kazak AE, Sood E. Parent Perspectives on Family-Based Psychosocial Interventions for Congenital Heart Disease. J Pediatr. 2020 Jan;216:51-57.e2. doi: 10.1016/j.jpeds.2019.09.059. Epub 2019 Nov 14. PMID: 31735417; PMCID: PMC6917908.