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临床试验/NCT05754619
NCT05754619招募中不适用

Le Emozioni Negli Stili di Comunicazione e Relazione di Genitori Con Figli Emofilici.

Fondazione Policlinico Universitario Agostino Gemelli IRCCS1 个研究点 分布在 1 个国家目标入组 10 人开始时间: 2022年10月14日最近更新:
适应症

试验速览

阶段
不适用
状态
招募中
入组人数
10
试验地点
1
主要终点
The study aims to highlight the ways in which the caregivers of haemophiliac children and young people manage and express their emotional experience through interviews and reports

研究概览

简要总结

Severe hemophilia is a rare, inherited, X-linked disorder. Currently, standard therapy involves ev infusion of drugs from a very young age.

The diagnosis of hemophilia is a traumatic event for the parents, even before the unborn child. The management of the hemophilia patient involves the whole family. Also in relation to its heredity.Focus on the ways in which parents of children with hemophilia manage their emotional experience.

详细描述

Severe hemophilia is a rare, inherited, X-linked disorder. Currently, standard therapy involves ev infusion of drugs from a very young age.The diagnosis of hemophilia is a traumatic event for the parents, even before the unborn child. The management of the hemophilia patient involves the whole family. Also in relation to its heredity.Focus on the ways in which parents of children with hemophilia manage their emotional experience.he diagnosis of hemophilia brings with it, in parents, fears, guilt, overprotective temptations that push us to act rather than to narrate the meaning of that need of ours, caregiving modes that risk engaging our operational side at the expense of recognizing ourselves and our feelings and emotions. We have no reason to think that that traumatic stimulus installs in us an atypical mode of resorting to our emotional intelligence. Therefore, it becomes even more significant to study parent-child communication processes on this target, to observe whether and how the adult's emotional area finds its place and expression. On the results of this work, the foundations could be laid for subsequent observational or interventional studies.

研究设计

研究类型
Observational
观察模型
Cohort
时间视角
Other

入排标准

年龄范围
10 Years 至 18 Years(Child, Adult)
性别
All
接受健康志愿者

入选标准

  • Haemophilia A

排除标准

  • No Informed Conset

结局指标

主要结局

The study aims to highlight the ways in which the caregivers of haemophiliac children and young people manage and express their emotional experience through interviews and reports

时间窗: 1 month

The study aims to highlight the ways in which care givers of hemophilic children and youth manage and express their emotional experiences. It therefore intends to answer these questions: * How do parents of hemophilic children and youth contribute to the development of their children's emotional intelligence? * What adult role model do they consciously or unconsciously propose in relation to frailties and fears? * How do they guide their children in dealing with frailties and fears? * Does the communication process they construct integrate their experience and is it congruent with it?

次要结局

  • opportunity for mirroring the parents interviewed by which they construct participation in their child's life in the experience of illness with interview and questionnaire.(3 months)

研究者

申办方类型
Other
责任方
Principal Investigator
主要研究者

De Cristofaro Raimondo

Prof. Raimondo De Cristofaro

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

研究点 (1)

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