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Process of Normalization in Families with Children Affected by Congenital Hemorrhagic Diseases
Last modified: 2010-04-21
Abstract
Objectives: This research is intended as an exploration of the normalization process in families with children in adolescence with moderately severe haemophilia, and of the various
therapeutic regimes which structure the different modalities and levels of normalization.
Design and Methods: The research was carried out in two phases. In all phases we administered semistructured
interview to the participants. The first phase of research involved 13 parents (5 fathers and 8 mothers) belonging to 10 families with children or teenagers suffering from a chronic hemorrhagic illness. In the second phase of research, we selected only three families and we interviewed mothers
and/or fathers in two following times. These families were chosen because of the heavy burden that haemophilia represented for them due to the severity of the illness and the difficulties for family organization. All these families began the prophylaxis at different time. The interviews were analyzed using the Thematic Analysis of Elementary Context from T-Lab software.
Results: The results that have emerged from the analysis of themes have made it possible to document a few aspects of the normalization process via a number of representations of daily life.
Conclusions: The founded results suggest that recourse to a therapeutic regime like prophylaxis can be an effective support to the recovery on the part of families of a planned family routine, in which the schedules developed in line with the new representation of the disease can constitute a new mode of family functioning.
therapeutic regimes which structure the different modalities and levels of normalization.
Design and Methods: The research was carried out in two phases. In all phases we administered semistructured
interview to the participants. The first phase of research involved 13 parents (5 fathers and 8 mothers) belonging to 10 families with children or teenagers suffering from a chronic hemorrhagic illness. In the second phase of research, we selected only three families and we interviewed mothers
and/or fathers in two following times. These families were chosen because of the heavy burden that haemophilia represented for them due to the severity of the illness and the difficulties for family organization. All these families began the prophylaxis at different time. The interviews were analyzed using the Thematic Analysis of Elementary Context from T-Lab software.
Results: The results that have emerged from the analysis of themes have made it possible to document a few aspects of the normalization process via a number of representations of daily life.
Conclusions: The founded results suggest that recourse to a therapeutic regime like prophylaxis can be an effective support to the recovery on the part of families of a planned family routine, in which the schedules developed in line with the new representation of the disease can constitute a new mode of family functioning.
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