Erleben von „chronic sorrow” bei Eltern von Kindern mit juveniler idiopathischer Arthritis

OBJECTIVE: The aim of this study was to assess emotional strain (”chronic sorrow”) in the parents of children suffering from juvenile idiopathic arthritis (JIA). MATERIAL UND METHODS: In a cross-sectional study, 161 parents of children with JIA were investigated by a clinical questionnaire in order to assess their experience of “chronic sorrow”, quality of life as well as clinical and demographical parameters. Comparison groups were parents of children suffering from type 1-diabetes (n = 69) und haemophilia (n = 55). RESULTS: Parents of children with JIA expressed pronounced worries, particularly so with regard to the potential side effects of medication (74.1 %) and the future of their children in general (62.3 %). A significant relationship was found between the extent of “chronic sorrow”, the severity of the child’s impairment (subjective evaluation), illness duration and the parent’s gender. As could be expected, pronounced illness worries go along with severely diminished quality of life in parents (r = -0.58; p ≤ 0.001). Compared with parents of children with diabetes or haemophilia, parents of children suffering from JIA experience “chronic sorrow” to a greater extent (F = 33.98; p≤ 0.001). CONCLUSION: Medical and psychosocial care should be more responsive to the experience of “chronic sorrow” in parents of children with JIA.