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Psychological impairment in adolescents with JIA: should we continue the search for evidence?

Background

Previous studies suggest that adolescents with JIA cope relatively well with the consequences of their painful and potentially incapacitating illness, and that, with regard to their psychosocial functioning, there seem to be few differences between them and healthy teenagers. The discrepancy between these findings and clinical experience gave us reason to search for a more subtle care and research method directly related to the adolescent patients' own experience. In this study, it is assumed that a person consists of different self-positions, ordered into a flexible and varied hierarchy that can alter over time, and in accordance to the demands of diverse contexts. Chronic illness could possibly lead to a more one-sided organization of a person's experience.

Methods

To study this hypothesis, 24 healthy teenagers, 36 adolescents with juvenile idiopathic arthritis (JIA) and 42 adolescents with chronic fatigue syndrome (CFS) completed the Personal Position Repertoire – a method designed to analyze the organization of an individual's personal positioning.

Results

The main findings of this study show that adolescents with JIA position themselves very similar to healthy teenagers. Their focus seems to be to present themselves as strong and healthy, perhaps at the cost of suppressing, or neglecting, their vulnerable and unwell sides. In notable contrast to this, adolescents with CFS position themselves as significantly less healthy and strong than healthy adolescents and adolescents with JIA.

Conclusion

Underneath the strong and positive presentation of adolescents with JIA, a much more diversified story lies. This conclusion will be illustrated by evidence from case-studies.

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Open Access This article is published under license to BioMed Central Ltd. This is an Open Access article is distributed under the terms of the Creative Commons Attribution 2.0 International License (https://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Fuchs, C., Sinnema, G., van Geelen, S. et al. Psychological impairment in adolescents with JIA: should we continue the search for evidence?. Pediatr Rheumatol 6 (Suppl 1), P160 (2008). https://doi.org/10.1186/1546-0096-6-S1-P160

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  • DOI: https://doi.org/10.1186/1546-0096-6-S1-P160

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