HOW DO PARENTS EXPERIENCE THE RARE DISEASE OF THEIR CHILD?

  • Iulia-Diana MURARU “Grigore T. Popa” University of Medicine and Pharmacy Iasi
  • Magdalena IORGA “Grigore T. Popa” University of Medicine and Pharmacy Iasi
  • Dana-Teodora ANTON-PADURARU “Grigore T. Popa” University of Medicine and Pharmacy Iasi
  • Simona DROCHIOI “Grigore T. Popa” University of Medicine and Pharmacy Iasi
  • Sinan ALWAN “Grigore T. Popa” University of Medicine and Pharmacy Iasi
  • F.D. PETRARIU “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Abstract

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.

Author Biographies

Iulia-Diana MURARU, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Faculty of Medicine
Department of Preventive Medicine and Interdisciplinarity

Magdalena IORGA, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Faculty of Medicine
Department of Preventive Medicine and Interdisciplinarity

Dana-Teodora ANTON-PADURARU, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

“Grigore T. Popa” University of Medicine and Pharmacy Iasi
Faculty of Medicine
Department of Mother and Child Medicine

Simona DROCHIOI, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Faculty of Medicine
Department of Mother and Child Medicine

Sinan ALWAN, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Faculty of Medicine
Department of Preventive Medicine and Interdisciplinarity

F.D. PETRARIU, “Grigore T. Popa” University of Medicine and Pharmacy Iasi

Faculty of Medicine
Department of Preventive Medicine and Interdisciplinarity

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Published
2018-06-30
Section
PREVENTIVE MEDICINE - LABORATORY