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

NCT ID: NCT05754619

Last Updated: 2023-03-06

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 10 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2022-10-14
• Study Completion Date: 2023-05-14

Brief Summary

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.

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.

Conditions

Hemophilia A

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: OTHER

Study Groups

patients with HA

20 parents with hemophilic children. The sample will consist of 10 mothers and 10 fathers.

No interventions assigned to this group

Eligibility Criteria

Inclusion Criteria

• Haemophilia A

Exclusion Criteria

• No Informed Conset

• Minimum Eligible Age: 10 Years
• Maximum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

OTHER

Sponsor Role: lead

Responsible Party

De Cristofaro Raimondo

Prof. Raimondo De Cristofaro

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Raimondo De Cristofaro, MD

Role: PRINCIPAL_INVESTIGATOR

Fondazione Policlinico Universitario A.Gemelli IRCCS Rome

Locations

FPG

Roma, , Italy

Site Status: RECRUITING

Countries

Italy

Central Contacts

Raimondo De Cristofaro, MD

Role: CONTACT

raimondo.decristofaro@policlinicogemelli.it

0630156329

Maria Basso, MD

Role: CONTACT

maria.basso@policlinicogemelli.it

0630156329

Facility Contacts

Raimondo De Cristofaro

Role: primary

raimondo.decristofaro@policlinicogemelli.it

0630156329

Other Identifiers

4913

Identifier Type: -

Identifier Source: org_study_id