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.