Patients with thalassemia major need more information about their disease and about the benefits of iron chelation therapy. Additional psychosocial support should reduce emotional distress, strengthen coping competence and lead to a better integration of therapy in daily life.
The course and the adaptivity of parental coping with a chronical disease in their child (leukemia, solid tumors, diabetes or epilepsy) was studied during the first three months after diagnosis. 66 parents answered questionnaires to their coping and their quality of life as well as to the perceived quality of life of their children 1-2 weeks and again 8-12 weeks after diagnosis. As coping was stable, the parents' and children's quality of life increased over time. Coping strategies using communication and social support improved the physical well-being of the parents. Family orientation and optimism are helpful for parents and children, too, but rumination decreased emotional well-being of the parents. Psychosocial care for families with a chronically ill child should improve open communication and social orientation in an early stage of the disease and should try to change maladaptive cognitive reactions.
The FLZ(KJ) are reliable and sufficiently valid, with psychometric properties comparable to the adult version of the instrument. The instrument is a useful tool in measuring life satisfaction in children and adolescents.
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