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DOI: 10.1191/0961203304lu1003oa Quality of life in paediatric lupusRobert Wood Johnson Medical School - UMDNJ, New Brunswick, NJ, USA, lnmoorthy{at}mac.com
Hospital For Special Surgery, New York, NY, USA
Hospital For Special Surgery, New York, NY, USA
Hospital For Special Surgery, New York, NY, USA
Hospital For Special Surgery, New York, NY, USA
Hospital For Special Surgery, New York, NY, USA
Hospital For Special Surgery, New York, NY, USA Paediatric systemic lupus erythematosus (SLE) is associated with significant morbidity and has biopsychosocialimplications resulting from the disease and its treatment. The aim of this study was to identify domains of quality of life (QOL) impacted by SLE in children. Children with SLE and their parents were asked a single open-ended question related to lupus. Themes derived from childrens responsesfocused primarily on coping and maintaining control of their life despite SLE. Themes from the parents responses were twofold: a) efforts to cope with their child having SLE; and b) appreciation/sadness in connection with their childrens coping process. Qualitative exploration of differentfacets of QOL in these children is critical for the understandingof specific factors that assist/ease the coping process and formulating interventions for improving childrens/familys self-efficacy and disease management.
Key Words: coping paediatric quality of life systemic lupus erythematosus
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