PhD defence M. (Malindi) van der Mheen

The main aim of this thesis was to examine and improve the psychosocial well-being of children with congenital or acquired heart disease. The general introduction in chapter 1 describes the background and main aims of the studies included in this thesis. The umbrella term ‘congenital heart defects’ (CHDs) describes multiple structural abnormalities of the heart and/or intrathoracic great vessels which emerge before birth. CHDs are the most common birth defect, estimated to affect 8 out of 1,000 live births. Children with a CHD are at elevated risk of emotional and behavioral problems (especially internalizing problems), posttraumatic stress symptoms, social problems, school problems, low exercise levels, and neuropsychological deficits. Moreover, developmental milestones such as starting school are more challenging for children with a CHD and their families than for healthy peers and their families. It is well-known that parental mental health influences children’s well-being. Unfortunately, parents of children with a CHD are also more likely to experience mental health problems. Previously, to improve the psychosocial well-being of children with a CHD and their families, the multidisciplinary Congenital Heart Disease Intervention Program (CHIP) - School was developed by Dr. McCusker and colleagues from the Royal Belfast Hospital for Sick Children. CHIP-School targeted to improve the psychosocial well-being of parents of children with a CHD who were entering school, aiming to indirectly improve children’s outcomes. Though CHIP-School obtained positive results regarding maternal mental health, perceived strain on the family, and school absence, children’s psychosocial well-being did not significantly increase. To improve these results, we extended and innovated the CHIP-School program by also including exercises for young children with CHDs and siblings in the program, thereby creating the CHIP-Family intervention. In this thesis, we investigated whether CHIP-Family improved the psychosocial well-being of young children (4-7 years old) with a CHD and their families. Furthermore, high levels of posttraumatic stress symptoms and posttraumatic stress disorder (PTSD) have been described in children who were hospitalized or underwent painful medical procedures. In adults, eye movement desensitization and reprocessing (EMDR) has been established as an effective treatment for posttraumatic stress symptoms and PTSD. In children, however, relatively few studies have been conducted into EMDR, but available studies show promising results. However, the trauma types studied were not focused specifically on medically-related trauma, but mainly concerned abuse, violence, or natural 176 Chapter 8 8 disasters. Therefore, in this thesis we aimed to examine the effectiveness of EMDR in children with a subthreshold PTSD after a medically-related event, including children with a CHD. The focus was on subthreshold PTSD as this is often underestimated, but may result in similar impairments as a clinical diagnosis of PTSD. Another aim of this thesis was to study emotional and behavioral problems of children with dilated cardiomyopathy (DCM), an acquired heart disease. Cardiomyopathies are disorders of the heart muscle. DCM is the most common type in children, affecting approximately 0.57 to 0.73 per 100,000 children per year. DCM has a poor prognosis and is the leading cause of cardiac transplantation. Research has already shown that children with DCM have lower health-related quality of life (HRQoL) than their healthy peers and that physical HRQoL predicts mortality and cardiac transplantation. However, since little was known about emotional and behavioral problems in pediatric DCM, we performed a study into these problems.

The PhD defences will not take place publicly in the Senate Hall or Professor Andries Queridoroom due to the coronavirus. The candidates will defend their thesis online.