How individuals with phenylketonuria experience their illness: an age-related qualitative study.
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.
Vegni
E
E
Chair of Medical Psychology, San Paolo Hospital, University of Milan, Milan, Italy. elena.vegni@unimi.it
Fiori
L
L
Riva
E
E
Giovannini
M
M
Moja
E A
EA
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001294:Attitude to Health; D002648:Child; D005247:Feeding Behavior / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010661:Phenylketonurias / Q000523:psychology*; D036301:Qualitative Research; D055815:Young Adult