Evaluation Of The Parents’ Anxiety Levels Before And After The Diagnosis Of Their Child With A Rare Genetic Disease: The Necessity Of Psychological Support

Abstract

Background The diagnosis of the rare genetic disease has great importance in treating multi-systemic conditions, preventing potential complications, and estimating disease risk for family members. The duration of getting genetic test results is variable. The demand of learning the diagnosis of a possible untreatable illness is a double-edged sword between obscurity and a lifetime chronic disease. The current uncertainty of their child's condition and the long duration time of diagnosis may increase the parents' anxiety level and causes difficulties to a continuation of diagnostic procedures in some families. This study aimed to investigate the pre-diagnosis and the post-diagnosis anxiety levels of parents who have a child with a rare genetic disorder. Results The state anxiety levels of parents decreased significantly after learning the diagnosis. However, there was no statistically significant decrease observed in trait anxiety levels. Conclusion Data from this study revealed that informing parents about their child's disease and properly explaining to them expected difficulties might help to reduce their anxiety levels. Psychological support from the hospital should be provided to help them cope with the stress before and after the diagnosis. Increasing the number of samples, interviews, and psychological inventory are recommended for future studies.