HOW DO PARENTS EXPERIENCE THE RARE DISEASE OF THEIR CHILD?
The aim of the study is to identify the opinions of caregivers of children with rare diseases regarding some aspects of their life or those of their child. The rare diseases included are: cystic fibrosis, phenylketonuria and hypothyroidism. Material and methods: A number of 35 parents provided socio-demographic data and answered to a questionnaire with 19 items. Data were processed using SPSS v. 20.0. Results: 90% of parents consider that their relationship with their partner did not change after the time of diagnosis. More than 75% of parents discussed their worries about the illness with their life partner. They consider that the most affected aspects of their child’s life are: relationship with friends and school activities. Most mothers self-evaluate themselves as being more involved in child’s health problem compared to their partner. Parents declared that they consulted a health professional to cope with stress (32.7% of parents consulted a psychologist and 19.6% a psychiatrist). No change was identified by parents regarding the child’ relationship with their siblings or teacher. Conclusions: Psychological support should be provided to parents having a child suffering from a rare disease. Comparative results are provided.
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