Trisomy 21, better known as Down syndrome, is the most common chromosomal mutation with an incidence of 1/800 live births. The anomaly on chromosome 21 in individuals with Down syndrome affects delayed mental and physical development. Developments in screening and diagnostic testing allow for the possible detection of Down syndrome during the prenatal period.
For parents, facing a child's diagnosis can be a challenging life trial. The feelings of happiness upon the birth of a child can be intertwined with feelings of worry and uncertainty. Most parents have high expectations for their child, envisioning a healthy child, with high ambitions and dreams, which are immediately shattered upon receiving the diagnosis. Parents are usually emotionally unstable and vulnerable after receiving the diagnosis. They are often accompanied by feelings of sadness and anxiety, intertwined with feelings of guilt and shame. Emotional responses to the diagnosis are more intense initially but tend to decrease over time. The process of acceptance and adaptation to the child's condition varies between families and depends on several factors, such as personality, support received, life experiences and attitude towards life.
In this master's thesis, we aimed to find out how parents cope with the diagnosis of trisomy 21. The research was conducted based on a case study of two pairs of parents of children diagnosed with trisomy 21. We conducted a semi-structured interview with the parents. We wanted to find out when and how parents received information about the child's diagnosis. We also wanted to understand how parents coped with the diagnosis and how coping with the diagnosis affected their relationship. Additionally, we were interested in the support and assistance provided and the possibility of consulting with professionals.
We used a descriptive method and a causal non-experimental method of pedagogical research. We found that in both cases parents found out about the child's diagnosis postnatally. All parents initially experienced shock, accompanied by feelings of fear, guilt, denial and disbelief. Both pairs of parents reported negative experiences with the medical workers. They spoke of a lack of compassion and empathy, and a "deadly" serious and cold delivery of the information. After receiving the diagnosis, neither pair of parents knew what the diagnosis meant for them and their child. We found that parents mostly sought information about the diagnosis on their own initiative. They emphasized the importance of other parents of children with trisomy 21. Both pairs of parents highlighted mutual support in the process of adapting to the diagnosis and the new dynamics within the family.
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