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Cultural aspects in the management of inborn errors of metabolism
Author(s) -
Stockler Sylvia,
Moeslinger Dorothea,
Herle Marion,
Wimmer Banu,
Ipsiroglu Osman S.
Publication year - 2012
Publication title -
journal of inherited metabolic disease
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.462
H-Index - 102
eISSN - 1573-2665
pISSN - 0141-8955
DOI - 10.1007/s10545-012-9455-4
Subject(s) - psychosocial , inborn error of metabolism , medicine , cultural diversity , immigration , intellectual disability , cognition , pediatrics , family medicine , psychology , psychiatry , sociology , geography , archaeology , anthropology
European Health Care Systems have not yet accommodated both previous and current migration waves. Children from immigrant families, especially children with chronic conditions, are particularly affected from the shortcomings in medical care. One condition, phenylketonuria (PKU), is an inborn error of metabolism (IEM) which results in intellectual disability unless treated with a lifelong phenylalanine (Phe) restricted diet. In our PKU clinic, patients from families who previously had emmigrated from the geographic area of Turkey to Austria, exhibited worse blood Phe control and cognitive development than comparable patients from native Austrian families. Using structured and semi‐structured interviews, questionnaires, and illness narratives, we identified language, psychosocial, economic, educational and cultural barriers as factors influencing adherence to treatment. Our findings led us to conclude that access to interpreter services, exploration of the socio‐cultural background and of family ecology, as well as bi‐directional communication and medical decision making according to the “best interest of the child” principle, may improve outcomes in patients requiring complex treatment and care.