Education of Children with Juvenile Idiopathic Arthritis & their Parents (in Germany)

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[2005] [sL0010] EDUCATION OF CHILDREN WITH JUVENILE IDIOPATHIC ARTHRITIS AND

THEIR PARENTS

JIA always affects whole the family. The quality of life, the interaction

within the family members will change and a lot of tasks have to be

executed. Moreover ignorance about JIA leads to anxiety, despair and self

doubts.

Dealing with patients with JIA involves an interdisciplinary approach which

has to keep in mind the various problems of JIA patients in respect of

functional- as well as psychosocial interactions.

This was the motivation to discover possibilities in order to elucidate

patients and their parents about reasons-, manifestations-, course-,

therapy- and prognosis of rheumatic diseases in childhood, and to enable

them to contribute actively in coping and decision making.

Initiated by the " Deutsche Rheuma-Liga Brandenburg " , in 1995 a

multiprofessional team of all major German childrens'' rheumatism centres as

well as parents of children with rheumatic diseases developed a special

training course for children with JIA. The programme which can be mediated

inpatient or outpatient is aimed at teaching children and their parents in

order to understand therapy and to manage the problems of living with

juvenile rheumatism.

The programme contains six different modules:

1. What means JIA (physician)

2. How to treat JIA (physician)

3. Rheumatism needs motion - " Physiotherapy fits! " (physiotherapist)

4. How to use occupational therapy (occupational therapist)

5. Psychological support/coping (psychologist)

6. Hints for dayly life and financial support (social worker)

In order to adapt education to the age of the paticipants it is taught in

three seperate groups: parents, children from about 8-12 years and juveniles

up to 18 years, but without rigid age limits.There are specialised teams of

trainers certified by the " Deutsche Gesellschaft für Rheumatologie " for

education in JIA.

The JIA programme has now passed 1st crucial test, a first evaluation had

been done and we can assess sucessfullness on trained patients and parents:

Increased ability of self management, knowledge, and concordance as well as

decreased complications and anxiety.

Moreover being engaged in JIA by taking part in education leads to family

discussions which create a good basis to deal with JIA much more

realistically.

By now education is a fixed part of JIA therapy in German childrens''

rheumatism centres.

Patient support and education 3

Citation: Ann Rheum Dis 2005;64(Suppl III):608

C. Grave1, A. Popella 2 1Elternkreise, Deusche Rheuma-Liga, Bundesverband

e.V., Hamburg, 2Elternkreis, Deutsche Rheuma-Liga, Landesverband Brandenburg

e.V., Cottbus, Germany