Le Emozioni Negli Stili di Comunicazione e Relazione di Genitori Con Figli Emofilici.
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
- 是
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
De Cristofaro Raimondo
Prof. Raimondo De Cristofaro
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
