Emotions in the Communication and Relationship Styles of Parents With Hemophilic Children.

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

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.

Study Overview

• Status: Recruiting
• Conditions: Hemophilia A

Detailed Description

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.

• Study Type: Observational
• Enrollment (Anticipated): 10

Contacts and Locations

• Study Contact: Name: Raimondo De Cristofaro, MD; Phone Number: 0630156329; Email: raimondo.decristofaro@policlinicogemelli.it
• Study Contact Backup: Name: Maria Basso, MD; Phone Number: 0630156329; Email: maria.basso@policlinicogemelli.it

Study Locations

• Italy
  • Roma, Italy, 00168
    • Recruiting
    • FPG
    • Contact: Raimondo De Cristofaro; Phone Number: 0630156329; Email: raimondo.decristofaro@policlinicogemelli.it

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 10 years to 18 years (Child, Adult)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

the study includes 20 caregivers, parents of childrens (10-18 yo) with Haemophilia

Description

Inclusion Criteria:

• Haemophilia A

Exclusion Criteria:

• No Informed Conset

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort
patients with HA; 20 parents with hemophilic children. The sample will consist of 10 mothers and 10 fathers.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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	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?	1 month

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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.	This study represents a potential opportunity for mirroring the interviewed parents, who in nonjudgmental observation will be able to see themselves and the unconscious dynamics by which they construct participation in their child's life in the experience of illness. Where interviewed parents show willingness and interest, a thirty-minute follow-up meeting will be held fifteen days/one month later, which will aim to accommodate their experience following the stimuli offered by the experience with our team. The main purpose, then, is in accompanying these people to process what will have emerged in the interview-interview	3 months

Collaborators and Investigators

• Sponsor: Fondazione Policlinico Universitario Agostino Gemelli IRCCS
• Investigators: Principal Investigator: Raimondo De Cristofaro, MD, Fondazione Policlinico Universitario A.Gemelli IRCCS Rome

Study record dates

Study Major Dates

• Study Start (Actual): October 14, 2022
• Primary Completion (Anticipated): May 14, 2023
• Study Completion (Anticipated): May 14, 2023

Study Registration Dates

• First Submitted: February 3, 2023
• First Submitted That Met QC Criteria: February 21, 2023
• First Posted (Estimate): March 6, 2023

Study Record Updates

• Last Update Posted (Estimate): March 6, 2023
• Last Update Submitted That Met QC Criteria: February 21, 2023
• Last Verified: February 1, 2023

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Hematologic Diseases; Blood Coagulation Disorders, Inherited; Coagulation Protein Disorders; Hemorrhagic Disorders; Genetic Diseases, Inborn; Blood Coagulation Disorders; Hemophilia A
• Other Study ID Numbers: 4913

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No