Introduction: An extensive medical literature (Petrini & Seuser, 2009) regarding adolescents with chronic illness shows that during adolescence there is an abandonment of treatment regimens and a reduced adherence to medical prescriptions. The aim of the research was to understand the phenomenon of the reduction of compliance in adolescents and young adults with chronic illness, particularly hemophilia, in regard to the representations of illness, the identity and the normalization processes. Methods: The research involved 20 adolescents and young adults suffering from a chronic hemorrhagic illness and 15 adolescents and young adults affected by diabetes. We administered semi-structured interview to all the participants. The interviews were analyzed using the Thematic Analysis of Elementary Context from T-Lab software (Lancia, 2004, Reinert, 1995). Results: In our hypothesis, from a psychosocial point of view, the reduction of compliance is related to different representations of the illness and such representations highlight how hemophilia is included in the process of construction of the Self, specifically referring to the increasing autonomy from the family and the socialization with peers. Discussion/Conclusion: The results suggest different themes that organize the affective and cognitive representations of both chronic diseases. In respect to haemophilia, the recourse to a therapeutic regime like prophylaxis looks like more associated to an integration of the illness in the Self and in the daily life, while the therapy on demand is more associated to a representation of the Hemophilia as external to the Self and concerning only the body. Furthermore, different ranges of age are linked to different kinds of representation: Hemophilia is considered by the adolescents like a body’s break, while it is considered by young adults as a mystery for which researching causes in the family history. In respect to diabetes, the analysis are still in progress.
Growing up with a chronic disease: identity, autonomy and compliance in adolescents and young adults affected by hemophilia / S Poti; F Emiliani; L Palareti; L Valdre; L Piscitelli; G Rodorigo. - In: HAEMOPHILIA. - ISSN 1351-8216. - STAMPA. - 19:s2(2013), pp. 31-31. [10.1111/hae.12085]
Growing up with a chronic disease: identity, autonomy and compliance in adolescents and young adults affected by hemophilia
POTI', SILVIA;EMILIANI, FRANCESCA;PALARETI, LAURA;
2013
Abstract
Introduction: An extensive medical literature (Petrini & Seuser, 2009) regarding adolescents with chronic illness shows that during adolescence there is an abandonment of treatment regimens and a reduced adherence to medical prescriptions. The aim of the research was to understand the phenomenon of the reduction of compliance in adolescents and young adults with chronic illness, particularly hemophilia, in regard to the representations of illness, the identity and the normalization processes. Methods: The research involved 20 adolescents and young adults suffering from a chronic hemorrhagic illness and 15 adolescents and young adults affected by diabetes. We administered semi-structured interview to all the participants. The interviews were analyzed using the Thematic Analysis of Elementary Context from T-Lab software (Lancia, 2004, Reinert, 1995). Results: In our hypothesis, from a psychosocial point of view, the reduction of compliance is related to different representations of the illness and such representations highlight how hemophilia is included in the process of construction of the Self, specifically referring to the increasing autonomy from the family and the socialization with peers. Discussion/Conclusion: The results suggest different themes that organize the affective and cognitive representations of both chronic diseases. In respect to haemophilia, the recourse to a therapeutic regime like prophylaxis looks like more associated to an integration of the illness in the Self and in the daily life, while the therapy on demand is more associated to a representation of the Hemophilia as external to the Self and concerning only the body. Furthermore, different ranges of age are linked to different kinds of representation: Hemophilia is considered by the adolescents like a body’s break, while it is considered by young adults as a mystery for which researching causes in the family history. In respect to diabetes, the analysis are still in progress.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
