Comprehensive Support for Families with Kids with Congenital Heart Diseases in Spain, Year IV

Project location: SPAIN, Madrid
Project start date: October 2016 - Project end date: September 2017
Project number: 2016-036
Beneficiary: FundaciĆ³n Menudos Corazones

Chronic disease, hospitalization and medical and surgical treatments put kids with congenital heart diseases and their families in a difficult situation which can threaten their physical as well as psychological development. The “Comprehensive support to families of kids with congenital heart diseases” seeks to provide a multidisciplinary support to parents, kids and siblings, in order to facilitate their adaptation to their new situation and the comprehensive development of the kid.
The project address the problem providing accommodation free of charge to the families who have to travel to Madrid to get medical attention, psychological support in the hospital and outside, as well as educational and recreational activities in hospital ward and rooms for kids and parents.
It includes two full-time psychologists, one external psychological advisor, one educator, and one administrator of free accommodation, as well as up to 12 rooms free of charge for families (hotels and apartments) who have to travel to Madrid to get medical attention.
In Spain every year 4.000 newborns have a congenital heart defect (8 out of every thousand babies born alive) and that approximately 78% of them will need heart surgery before their first year of age and 70% within their first three months: a constant support through the years will be needed to give attention to new families which face every year a child’s diagnosis of congenital heart defect.
This project will support approximately 1.000 families with free accommodation and psychological attention, besides to dedicate resources to general awareness and fundraising in order to grow in such a way that in the future no family with a kid with congenital heart defect remains alone facing a difficult emotional and socio-economical situation.
“Comprehensive support to families of kids with congenital heart diseases” will take place in Madrid, Spain, attending any kid with heart disease, including those travelling from abroad to get medical attention in Spain. 
Operational procedures and methodology of the project involves:

  1. Management of requests for housing, management of keys, household items, printed rules, feedback tests at the checking-out, inquires about families’ socio-psychological needs in order to get in touch with the psychological, if needed, weekly phone calls to follow-up of the situation of families and support them in whatever it’s possible, constant communication between the person in charge of housing and the psycho-educational department working in hospitals in order to keep update the situation of children and parents and weekly monitoring to keep healthy and nice the apartments and to solve any little problem.
  2. Getting in touch every week with the nursing staff at each hospital to know about new patients and follow-ups, individual meetings with parents to offer information or specific support, arrangements of activities for children, phone calls to families after surgery to follow-up, attending phone calls for information, personal meeting at the office with parents and/or children and teenagers, coordination of the grief support group which meets monthly, update of the grief support group online forum and meetings of psychologists with the external advisor for long-terms planning and feedback.
  3. Monthly recollection of data from accommodation and psychological attention and educational activities.

“Comprehensive support to families of kids with congenital heart diseases” will run from October 2016 to September 2017. With this project, Fundación Menudos Corazones aims to improve in quality of life of children with congenital heart defects and their families.

This project previously received also from the The Nando Peretti Foundation.

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