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SP0145 Challenges faced by parents with a child having a rheumatic disease
  1. M. Bukovský,
  2. S. Bukovská
  1. General University Hospital in Prague, Nové Město pod Smrkem, Czech Republic

Abstract

There are multiple challenges parents of a chronically ill child have to face. The background family situation including psychological and socioeconomic factors plays a major role in the development of coping strategies. Onset of Juvenile Idiopathic Arthritis (JIA) in a previously healthy child appears the most difficult time. Acceptance and understanding of the disease and its treatments, changes to the family daily routine and related limitations are among the main characteristics of the first months after the diagnosis. Close contact with the rheumatology team helps with the problems related to methotrexate application and side effects. We will review the parents’ perspective of the treatment with its positives and negatives and will share our current feelings as well as our worries regarding her long-term prospects. The patient and family views expressed in a structured manner using a health-related quality of life instrument (CHAQ, JAMAR) have become an important part of overall JIA assessment.

Disclosure of Interest None Declared

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