Congenital heart diseases are the most common congenital disorders, occurring in 1% of all newborns. In Slovenia, this number represents 80-100 children annually, meaning that 160-200 parents face the diagnosis of a congenital heart disease each year. Since congenital heart diseases can also be life-threatening, this experience is very stressful for parents. There are numerous types of heart diseases. Infants with a congenital heart disease require immediate surgical treatment in 50% of cases, which can lead to prolonged hospitalization and separation from their parents. During this period, they undergo numerous invasive and non-invasive tests. The heart disease can be detected and confirmed during pregnancy with appropriate testing. The birth of a child with a congenital heart disease is therefore planned at the maternity hospital in Ljubljana, where the child has access to immediate appropriate intervention and treatment. As there are different children with congenital heart diseases, there are different cases. Each child responds differently to a congenital heart disease, either showing characteristic symptoms or being asymptomatic. However, children who require treatment for a heart disease in the first year of life also need special care and attention, and their parents require specific and quality information about the congenital heart disease, its impact on the child's future life and development. This information must come from professionals involved in the child's treatment.
In this master's thesis, we aim to determine how parents cope with the diagnosis of their child's congenital heart disease. We included ten parents of children with congenital heart diseases, whose children underwent heart surgery in the first year of life, in the study. Of the ten selected parents, six learned about the diagnosis during pregnancy, while four learned within the first twenty-four hours after birth. The research used a descriptive and causal non-experimental method of educational research. We conducted a qualitative case study with a purposive non-random sample.
The children of the selected parents underwent varying numbers of procedures, ranging from one to three, and were hospitalized for different lengths of time, from two days to just under a month. We found that parents initially experience shock when facing the diagnosis. This is something they did not expect. The initial shock is followed by various feelings such as sadness, anger, guilt, denial of the diagnosis, withdrawal, or immediate response and seeking information, as well as conversations with others who are either knowledgeable about health or not. Parents mentally withdraw from the situation in difficult moments, turn to faith and pray, cry, and also talk to their partners.
Just as every child with a congenital heart disease is different and unique, so is the response of each parent to coping with the diagnosis. The study showed that the entire experience left consequences on the parents' mental health. Parents tend to be more protective of children with congenital heart diseases, fearing various illnesses that could worsen the condition, so they try to protect their children from them.
We also found that parents never wished for the death of their child and never thought it would be better if the child died.
Parenst completely accept child with congenital heart disease and do not wiev him as a child with health issues; they simply overlook them. Through the research, we found that parents most often resort to conversations with their partners and seeking information elsewhere. They also turn to the association "S srcem za srčke," which is a Slovenian organization providing help and support to parents of children with congenital heart diseases.
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