Preliminary communication
https://doi.org/10.21860/j.16.1.10
Difficulties and support for families of children suffering from rare diseases
Jadranka Pavić
; University of Applied Health Sciences Zagreb, Faculty of Health Studies, University of Rijeka
*
Mateja Krznar
; DEBRA, Dystrophic Epidermolysis Bullosa Research Association, Croatia.
Irena Kovačević
orcid.org/0000-0001-5673-9515
; University of Applied Health Sciences Zagreb, Faculty of Health Studies, University of Rijeka
* Corresponding author.
Abstract
Children suffering from rare diseases face health problems that require complex medical and parental care, and they are often in life-threatening conditions. Due to the rarity of these diseases, numerous issues arise from insufficient empirical experience. Complex and prolonged diagnostics, uncertain progression, and treatment effectiveness lead to the physical and mental exhaustion of parents, as well as many problems within the family. Families of these children encounter emotional, social, economic, organizational, ethical, and other difficulties. While some families show a positive coping pattern by seeking ways to achieve the best possible quality of life, others remain in a state of “burnout in illness”, which leads to psychosomatic disorders and instability in family functioning. The aim of this paper is to present the difficulties faced by families of children with rare diseases, the reflection of the child’s illness on the family’s quality of life, and the identified support needed for these families.
Keywords
rare diseases; children; parental care; parental support
Hrčak ID:
344173
URI
Publication date:
6.2.2026.
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