Before Mental Health Collapses
Online training to enhance life satisfaction of patients with CHD
Scientific name of the study
Effectiveness of emotion regulation training in adults with congenital heart defects
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.
Important to know
What To Do When the Psyche Goes on Strike?
If you urgently need help, for example, because you have the impression that you can no longer control your worries and thoughts, we strongly recommend that you contact one of the help facilities:
The telephone counseling service Telefonseelsorge provides help on the freephone numbers 0800 111 0 111 or 0800 111 0 222.
Questions about depression and help in your residence can be answered by the Info-Telefon Depression of the Deutsche Depressionshilfe under the phone number: 0800 33 44 533. On the websites of the Deutsche Depressionshilfe, you will find further healthcare services and clinics.
In emergencies, such as urgent and concrete suicidal thoughts, please contact the nearest psychiatric clinic or the emergency doctor on 112.collapse
In charge of the project:
Ulrike Bauer is the Scientific Managing Director of the National Register for Congenital Heart Defects and the Competence Network for Congenital Heart Defects. More
Ulrike Bauer studied human medicine at the Humboldt University of Berlin. After finishing her doctorate on echocardiography in congenital heart disease, she was a resident for internal medicine at the county hospital in Chemnitz, after which she transferred to the Institute for Cardiovascular Diagnostics at the Charité Berlin. From there she transferred to the department of pediatric cardiology at the German Heart Center, Berlin (Deutsches Herzzentrum Berlin). Under the guidance of Prof. Dr. Peter E. Lange, Ulrike Bauer started setting up a nationwide register for congenital heart disease. The initiative by Prof. Dr. Peter E. Lange lead to the founding of the association of the National Register for Congenital Heart Defects. It was jointly supported by the board of trustees of Deutsches Herzzentrum Berlin and the cardiac societies, as well as by parent and patient associations. The same year was also the kick-off for creating the Competence Network for Congenital Heart Defects, which could took place thanks to government grants. Ulrike Bauer is a member of the German Society of Paediatric Cardiology (DGK), the European Society of Cardiology (ESC), the German Cardiac Society (DGK) and the Association for European Paediatric and Congenital Cardiology (AEPC).
Luise Prüßner is a research associate in the Department of Clinical Psychology and Psychotherapy at the Ruprecht Karls University of Heidelberg. More
Luise Prüßner studied psychology in Hildesheim and Heidelberg from 2011 to 2016. After completing a Fulbright scholarship at Yale University in New Haven, USA, she worked as a research associate in Clinical Psychology and Psychotherapy at the Department of Psychology, Heidelberg University, since 2017. Her research interests include linking applied clinical research and basic science on the role of emotion regulation in the development and maintenance of psychopathology.
Anna-Lena Ehmann studies at the Ruprecht-Karls-University of Heidelberg. More
Anna-Lena Ehmann has been studying psychology at Ruprecht-Karls-Universität Heidelberg since 2015 and is currently completing her master’s degree with a focus on clinical psychology and developmental psychology. She wrote her bachelor’s thesis in 2019 in cooperation with the National Registry for Congenital Heart Defects on the topic of “Emotion regulation in people with congenital heart defects.”Universität Heidelberg