Abstract
Standard language even of educated people is insufficient for understanding diagnoses and treatment of inherited metabolic diseases. Therefore, communication with parents and patients requires teaching skills like explanation by analogy and visualisation. Comprehensive repeated information and counselling is necessary, because treatment has to be executed lifelong by patients and families themselves mostly at home or in their everyday life environment. New questions and demands arise in the course of the disorder or with age, making communication a continuous aspect of treatment and care. All information and counselling of patients and families should be given in close cooperation of all specialists involved.
Scientific evidence and clinical experience allow the prediction of information needs and questions of patients, facilitating the preparation and training of communication skills and material supporting information transfer. Untrained professionals are at risk to overestimate their communicative competence and should be monitored by interprofessional supervision.
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Burgard, P. (2017). Structured Communication and Behavioural Medicine. In: Hoffmann, G., Zschocke, J., Nyhan, W. (eds) Inherited Metabolic Diseases. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-49410-3_7
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DOI: https://doi.org/10.1007/978-3-662-49410-3_7
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