Medicine and Healthcare | Everyday Life
Child With Congenital Heart Defect? How Do Fathers Deal With It?
New National Registry study explores this subject.
A hole in the heart's septum, a malformation of the blood vessels, a narrowing of the pulmonary artery. Congenital heart defects are many and varied. Most of them can be corrected today. But the diagnosis catches most parents unprepared. And it remains: Even after successful correction, the chronic disease requires continuous medical support and a great deal of attention. As a result, care, concern and support are becoming increasingly important in parental life.
What Does This Mean For Fathers?
The role of mothers in raising, caring for and supporting affected children is now well researched. But how do fathers deal with it? Does their approach to their child's chronic illness differ from that of mothers? And what influence do the severity of the congenital heart defect and, if applicable, additional physical or cognitive impairments of the child have? The Bundesverband Herzkranke Kinder e. V. (BVHK) wants to know more precisely and has commissioned the National Registry to conduct a study on this.
1,100 Mothers and Fathers Participated
Together with the BVHK, we developed a questionnaire for this purpose. Around 1,100 mothers and fathers of National Registry participants have answered it. Based on the survey results we are currently determining what support is needed by fathers and what support is needed by mothers. We want to find out what resources, if any, need to be developed to help them cope well their challenges, problems, and potential crises on an individual basis.
Improving Therapeutic Accompaniment
It is known from numerous studies that patients with congenital heart defects are at increased risk for psychological impairment. It is also widely established that the family and social environment plays a crucial role in successful holistic treatment. We hope that the results of our study will provide a scientific basis for appropriate improvements in therapeutic care. This can be a decisive factor for the life satisfaction and quality of life of patients and also their relatives.
In charge of the project:
Ulrike Bauer, born in 1958, 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).