[Psychosocial support of patients with homozygous beta-thalassaemia]

The prognosis and therewith the quality of life of patients with beta-thalassaemia major is decisively influenced by the compliance with the therapy of the patients and their families, who are massively burdened with this lifelong and much time requiring treatment. To improve the compliance with therapy a group of 10 afflicted adolescents and young adults aged between 15 and 27 years was founded in 1992. The aims are to get to know the reasons for the unsatisfactory compliance with therapy, to promote the exchange of experience how to deal with the disease and its treatment, to give comprehensive medical informations and to improve in this way the own responsibility and the compliance with therapy. At the monthly meetings aspects of interaction between parents and the child with a hereditary disease are discussed. Also the themes of self-image and body image of these adolescents are set who are stigmatized by thalassaemia and grow up in uncertainty about the development of their disease and often suffer from mortal fear. Possibilities and limits of integration of these chronically ill patients within school and profession, and not at last within the clinique are debated. Although two members of this group have died, our patients show more interest in their disease, their therapy and their prospects since the beginning of this psychosocial care. The compliance with therapy has become better in the majority of patients.