The heart is a remarkable organ. Heartbeat after heartbeat, it pumps a tanker load of blood through our circulatory system every day. When the heart stops working, we die. One in one hundred children is born with a congenital heart defect. In the past, this condition was a death sentence in most cases. Today, modern medicine ensures survival even in cases of severe heart malformations. About 90 percent of all patients reach adulthood.

The Heart is Helped. But What About Mental Health?

A congenital heart defect poses significant challenges for those affected and their environment from the very beginning, which can be emotionally very stressful. Even in adulthood, everyday life with the heart disease creates a challenge to an individual’s psychological resilience. This is noticeable: Studies show that people with congenital heart defects suffer more frequently from mental disorders compared to the general population.

The Corona Pandemic Exacerbates Stressors

The Corona pandemic adds further stressors. The need for protection against infection with Covid-19 forces patients with complex congenital heart defects to isolate themselves. In addition, routine examinations, catheter interventions, and surgeries have to be postponed due to the clinic’s overload. All of this increases uncertainty and anxiety and severely affects quality of life.

A survey conducted from April to July 2021 among participants in the National Registry on the impact of the pandemic on their everyday experience revealed substantial interest in easily accessible online services for psychological treatment and support.

Digital Training to Enhance Life Satisfaction

“Emotion regulation training”. This relatively unknown term encompasses instructions and exercises developed by psychologists to help us cope effectively with feelings such as anxiety, depression, restlessness, or sadness. The training utilizes evidence-based cognitive behavioral therapy methods that allow us to accept, assess and cope with stressful events and the emotions they cause in everyday life.

At the Department of Psychology, Heidelberg University, we develop emotion regulation trainings specifically for adults with congenital heart defects. The digital aids can be used via computer, tablet, or smartphone to help deal with stressful situations caused by the disease anytime and anywhere. With the support of participants in the National Registry for Congenital Heart Defects, we are studying the efficacy of the training as part of a nationwide study. The aim is to create an effective online intervention that can be easily accessed and incorporated into everyday life to strengthen resilience, increase life satisfaction, and prevent the development of mental disorders.

Control Group to Understand the Effectiveness

We still know too little about psychosocial interventions for congenital heart defects. There is only a scarcity of studies testing the effectiveness of these types of interventions. Can an emotion regulation training to deal with fears, uncertainties, and negative experiences caused by the congenital heart defect help reduce stress and increase life satisfaction even better than a general emotion regulation training?

To find out, we compare the short- and medium-term effects of the training developed specifically for adults with congenital heart defects with that of general emotion regulation training, taking into account the pseudonymized medical data of the study participants recorded in the National Registry. Additionally, we will study psychological and emotional functioning in a waitlist control group, which starts the emotion regulation training after a delay.

Five Minutes of Online Training per Day and Three Surveys

We specifically invite adult participants of the National Registry for Congenital Heart Defects. Individuals who are included in the study will be randomly assigned to either one of the two training groups or the control group. They will participate in a four-week training session during two test phases. The training consists of a short introduction and various interactive exercises, which take up to five minutes daily. The training includes texts, video material, audio files, and everyday practices to help deal with emotions in specific situations.

Moreover, we will conduct three online surveys during the study, one before the training and one after the end of each training session. Answering the online questionnaires will take about 20 to 30 minutes.

We would like to take this opportunity to thank all participants for taking part in the study. We will keep you informed about the findings.