An Examination of the Neurodevelopmental and Psychosocial Care Provided to Pediatric Patients with Congenital Heart Disease and Their Families

Date of Award

2019

Degree Name

M.A. in Clinical Psychology

Department

Department of Psychology

Advisor/Chair

Advisor: Keri J. Brown Kirschman

Abstract

The current study was conducted to explore the current neurodevelopmental and psychosocial care practices provided to pediatric patients with congenital heart disease (CHD) and their families who receive care at cardiac centers in North American hospitals. A survey was created for the study and emailed to pediatric cardiology providers employed at North American pediatric cardiology clinics. The final sample included 47 pediatric cardiac providers representing unique North American hospitals. Of the participating hospitals, 68.09% reported the presence of an established cardiac neurodevelopmental program at their cardiac center. Most commonly, providers reported that the inpatient care team refers patients to the cardiac neurodevelopmental program and patients are contacted for enrollment prior to being discharged. It was reported that 44.68% of cardiac teams systematically evaluate and screen children with CHD for disabilities or delays. The American Heart Association and American Academy of Pediatrics age recommendations for systematically screening and evaluating high risk patients with CHD for disabilities or delays were reportedly followed by 8.51% of cardiac teams when screening patients with a cyanotic CHD and 6.38% of cardiac teams when screening high risk patients with an acyanotic CHD (Marino et al., 2012; AAP, 2006). Cardiac clinics that do not screen high risk patients for developmental disabilities or delays most frequently reported that communication does not occur between their patients' cardiac and primary care providers to ensure recommendations are followed. Pediatric to adult CHD transition programs are reportedly established at 74.47% of the represented cardiac centers. Compared to cardiac centers without a transition program, centers with a transition program were found to be more likely to begin preparing patients age 16 or younger for their transition to adult CHD care. Patients are referred to psychology on an as needed basis by the majority of cardiac teams, and social work was most commonly reported to be a liaison to the cardiac team that does not require a referral to provide care. Patients, parents, and siblings are reportedly screened for psychosocial maladjustment at 40.43%, 17.02%, and 10.64% of the represented cardiac centers, respectively. Providers reported that patients are most frequently screened during yearly follow-up appointments and parents are most frequently screened around the time their child is diagnosed with CHD. In terms of psychosocial care, providers perceived their teams to be strongest in their ability to educate patients and families about CHD and weakest in their ability to attend to the psychological needs of siblings. Barriers to providing developmental and psychosocial care included a lack of resources and the absence of dedicated mental health professionals on the cardiac team, and facilitators to providing care included the integration of social work and the availability of a cardiac neurodevelopmental program at the cardiac center. Future research should consider continuing the identification of feasible and efficacious psychosocial and developmental services that may assist cardiac centers as they strive to meet the suggested guidelines for care.

Keywords

Clinical Psychology, pediatric congenital heart disease, psychosocial care, neurodevelopmental care, transition of care

Rights Statement

Copyright © 2019, author

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