Everyday life with a congenital heart defect can be stressful, resulting in a higher risk of mental health disorders., iStockphoto.com | Marjan_Apostolovic © iStockphoto.com | Marjan_Apostolovic

Everyday Life

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?

    Expert help is important in mental health emergencies. © iStockphoto.com | ina9
    Expert help is important in mental health emergencies.

    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.

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The study is sponsored by Fördergemeinschaft Deutsche Kinderherzzentren e. V. © Fördergemeinschaft Deutsche Kinderherzzentren e. V.
The study is sponsored by Fördergemeinschaft Deutsche Kinderherzzentren e. V.

In charge of the project:

  • Dr. med. Ulrike Bauer, Wolfram Scheible für Nationales Register © Wolfram Scheible für Nationales Register

    Dr. med. Ulrike Bauer

    Ulrike Bauer is the Scientific Managing Director of the National Register for Congenital Heart Defects and the Competence Network for Congenital Heart Defects. More

    Kompetenznetz Angeborene Herzfehler e. V.
    Netzwerkzentrale

    Augustenburger Platz 1
    13353 Berlin
  • Dr. rer. medic. Paul Christian Helm, Dipl.-Psych., Wolfram Scheible für Nationales Register © Wolfram Scheible für Nationales Register

    Dr. rer. medic. Paul Christian Helm

    Kompetenznetz Angeborene Herzfehler e. V.
    Netzwerkzentrale

    Augustenburger Platz 1
    13353 Berlin
  • M.Sc. Luise Pruessner, Department of Psychology, Heidelberg University, privat © privat

    M.Sc. Luise Prüßner

    Luise Prüßner is a research associate in the Department of Clinical Psychology and Psychotherapy at the Ruprecht Karls University of Heidelberg. More

    Universität Heidelberg
    Psychologisches Institut

    Hauptstraße 47-51
    69117 Heidelberg
  • B.Sc. Anna-Lena Ehmann, Department of Psychology, Heidelberg University, privat © privat

    B.Sc. Anna-Lena Ehmann

    Anna-Lena Ehmann studies at the Ruprecht-Karls-University of Heidelberg. More

    Universität Heidelberg
    Grabengasse 1
    69117 Heidelberg

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