Quality of life of persons taking care of children with inherited metabolic disease
Authors:
J. Michalik 1; M. Valenta 1; T. Honzík 2,3; M. Magner 2; J. Zeman 2,3; M. Hůlková 2; P. Ješina 3
Authors‘ workplace:
Ústav speciálně pedagogických studií, Pedagogická fakulta Univerzity Palackého, Olomouc
přednostka doc. PhDr. Eva Souralová, Ph. D.
1; Klinika dětského a dorostového lékařství 1. LF UK a VFN, Praha
přednosta prof. MUDr. J. Zeman, DrSc.
2; Ústav dědičných metabolických poruch 1. LF UK a VFN, Praha
přednosta prof. MUDr. V. Kožich, CSc.
3
Published in:
Čes-slov Pediat 2012; 67 (6): 376-384.
Category:
Original Papers
Overview
Inherited metabolic diseases (IMD) represent a large heterogenic group of diseases which require a long-term care. Improved diagnostic and, especially, therapeutic possibilities prolong the life of patients with IMD. It raises the questions of quality of life, not only to the patients, but also to those who take care of them. The authors describe psycho-socio-economic aspects mapping the quality of life persons who take care of children with IMD encounter.
The study evaluated questionnaires obtained from parents of children with metabolic diseases in general and a specific group of parents with children suffering from mucopolysaccharidosis (MPS). All respondents experienced deteriorated psychic stability, socioeconomic indices and social life of their families. The evaluation of the observed aspects proved to be worse in the IMD group. On the other hand, the married couples did not differ from the unmarried partners in the area of divorce rate, in comparison with the situation in the Czech Republic. The care of children with IMD includes a specialized health care as well as a necessary social therapeutic support reflecting the quality of life of the child and the family which takes care of the child.
Key words:
quality of life, persons taking care of the patients, hereditary metabolic disease, mucopolysaccharidosis
Sources
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Labels
Neonatology Paediatrics General practitioner for children and adolescentsArticle was published in
Czech-Slovak Pediatrics
2012 Issue 6
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