Paul C. Helm¹, Sebastian Kempert², Marc-André Körten¹, Wiebke Lesch³, Katharina Specht³, Ulrike M. M. Bauer^1,3

Congenital Heart Disease, Vol.13, No.3, pp. 377-383, 2018, DOI:10.1111/chd.12581

Abstract Background: Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients’ and parents’ perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions.
Materials and Methods: Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD). The total sample (N = 818) was divided into four groups: “Children” (176 patients), “Adolescents” (142 patients), “Adults” (269 patients), and “Parents” (231 parents). The patients were… More >

Astrida Kaugars¹, Clarissa Shields², Cheryl Brosig³

Congenital Heart Disease, Vol.13, No.1, pp. 72-78, 2018, DOI:10.1111/chd.12547

Abstract Objective: The study examined parent stress and health-related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services.
Methods: Parents of 54 children (85% boys) aged 3 to 13 (M_age = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index – Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review.
Results: Half of parents of children with single ventricle anatomy had clinically significant levels of parenting stress. Parents of children with single ventricle anatomy reported more frequent illnessrelated… More >

Oscar Werner¹, Fedoua El Louali², Virginie Fouilloux³, Pascal Amedro^1,4, Caroline Ovaert^2,5

Congenital Heart Disease, Vol.14, No.5, pp. 778-784, 2019, DOI:10.1111/chd.12777

Abstract Objective: Medical information provided to parents of a child with a congenital heart disease can induce major stress. Visual analog scales have been validated to assess anxiety in the adult population. The aim of this study was to analyze parental anxiety using a visual analog scale and to explore the influencing factors.
Design: This prospective cross‐sectional study.
Setting: Tertiary care regional referral center for congenital heart disease of Marseille—La Timone university hospital.
Patients: Parents of children with a congenital heart disease, as defined by the ACC‐ CHD classification, referred for cardiac surgery or interventional cardiac catheterization, were offered to participate.
… More >