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How individuals with phenylketonuria experience their illness: an age‐related qualitative study
Author(s) -
Vegni E.,
Fiori L.,
Riva E.,
Giovannini M.,
Moja E. A.
Publication year - 2010
Publication title -
child: care, health and development
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.832
H-Index - 82
eISSN - 1365-2214
pISSN - 0305-1862
DOI - 10.1111/j.1365-2214.2009.01000.x
Subject(s) - qualitative research , psychology , developmental psychology , medicine , pediatrics , sociology , social science
Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups. Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory. Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range. Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective.