Difficulties and support for families of children suffering from rare diseases

Authors

  • 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 University of Applied Health Sciences Zagreb, Faculty of Health Studies, University of Rijeka

Keywords:

rare diseases, family support, empowerment

Abstract

https://doi.org/10.21860/j.16.1.10

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.

Downloads

Published

2025-08-19

Issue

Vol. 16 No. 1 (2025): Jahr – European Journal of Bioethics

Section

Bioetika i aporije psihe 2025/1

License

Authors who publish with this journal agree to the following terms:

  1. Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
  1. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
  1. Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).