Psychosocial Support for Children with Congenital Heart Diseases and their Families and Accommodation during Child's Hospitalization in Madrid

Project location: SPAIN, Madrid
Project start date: October 2016 - Project end date: This project covers various years
Project number: 2016-036
Beneficiary: Fundación Menudos Corazones

[2018-021 | 2022-007]

This project received grants from 2012 to 2016 from the Nando and Elsa Peretti Foundation (see this project). From 2016, it has received grants from the Nando and Elsa Peretti Foundation, Delegació a Catalunya.

Fundación Menudos Corazones was born from a group of parents of children with congenital heart diseases in 1999 to answer unmet needs of families facing such a situation. The initial association adopted the legal form of a Foundation in 2003, and has, since its beginnings, dedicated its activities to the objective of allowing the cure, the comprehensive development and the increase in quality of life of kids and teenagers with congenital heart diseases and their families (parents and siblings).

The following projects are being carried out: 

-Accommodation free of charge for families who must move temporarily to Madrid due child’s hospitalization for surgery or other treatment 

-Psychological support for parents and children and young people with a congenital heart disease 

-Individual and group psychological support for parents who lost a child from a congenital heart disease 

-Education activities for children in hospitals in Madrid (in ward, rooms and paediatric ICUs). 

-Summer camps for children and teenagers with congenital heart defects and their siblings 

-Sport and psychosocial supporting activities for young people born with a heart defect 

-Early intervention for babies born with a heart disease and attention to children and teenagers facing learning difficulties  

-Orientation service on Public Social resources for families with children with congenital heart defects  

-Online and printed information on congenital heart diseases (Website, Social Networks, guides and booklets) 

A congenital heart defect is a malformation of the heart or large blood vessels with a genetic origin (it is transmitted in the genes) and so is present in the foetus and in new-borns. Some congenital heart defects show themselves clinically at later ages (months or years later). The children are born with a heart which lacks a part or has a part incomplete or has holes in the walls between its chambers, or its valves leak or the blood vessels are narrow. There are many types of congenital heart defects, from those which produce a mild risk to the child’s health to those of greater risk which need immediate surgery. 

Heart defects are the most common serious congenital pathology in Spain, affecting eight in every thousand children born, which means 4,000 new cases each year. Most of these heart defects are mild and only requires periodic heart check-ups. Other heart defects need therapeutic interventions by means of catheterization or surgery. The most severe heart defects need successive surgery with long stays in the hospital, as well as regular check-ups. Medical follow-ups must continue during adulthood. Approximately 78% of them will need heart surgery before their first year of age and 70% within their first three months. 

Menudos Corazones’ projects aim to improve quality of life of children with congenital heart defects and their families. Living with a serious chronic disease, frequent and/or long periods of hospitalization and medical and surgical treatments put kids and their families in difficult situations which can threaten their physical as well as psychological development. This project seeks to provide a multidisciplinary support to parents and children in order to facilitate adaptation to a new and hard situation. 

The project aims to contribute to solve usual problem of these families providing:

1) Psychological support from two psychologists for parents and children at any moment: when diagnosis is announced, waiting for surgery, during hospitalization, after surgery, waiting for a heart transplant, or when facing any difficult adjusting to family life, school, or social relations.

2) Activities for children when hospitalized in public hospitals in Madrid (“Gregorio Marañón”, “La Paz”, and “12 de Octubre”) designed and coordinated by an education professional with the collaboration of volunteers. Beginning January 2022 this kind of activities will be possible again in hospitals after being restricted due to COVID-19 pandemic. Children from any place in Spain are treated in these hospitals in Madrid because they are specialized Units on paediatric cardiology and paediatric heart surgery. These educational activities aim to counter through playing many negative side effects from the hospital environment and routines and to contribute to develop a more friendly and humanized stay for children.  

3) Free accommodation in Madrid for parents who travel because of the hospitalization of children so they can be nearby them. A social worker manages requests for accommodation and a waiting list to access to 14 double-rooms available for families: 8 rooms in house owned by Menudos Corazones, 3 rooms in an apartment also its property, and 3 hotel rooms provide by the NH firm all year around since more than a decade.

4) Early intervention’ sessions on physiotherapy, and speech-therapy, and movement therapy for babies and children with difficulties in their neuro-cognitive development due to complex open-heart surgeries and very long hospital stays. A psychologist informs families on the need for early intervention and manages appointments with external professionals in those cases in which the family has no access to public resources for early intervention or the child is in waiting list for this care service, which should not wait to be effective.  

Operational procedures and methodology involve:  

- Accommodation: management of requests for housing (sign-up lists, waiting lists, information to families, modification of reservation dates due to changes from hospital appointments, etc.), managements of checking-in and out in the apartment or house, explanations of rules for families to have a nice coexistence in common areas, and useful tips to move around Madrid with the best options to get to the hospital. Since April 2020, it is a requirement for parents before their checking-in to get a negative result for COVID-19: tests are provided free as result from a private donation. A social worker is also responsible of keeping track of the situation of the child in hospital and suggest an appointment with a psychologist if needed. The social worker, the psychologist in charge of the psychological area, and the educator maintain regular contact among themselves to provide children as well as parents the attention they need. 

A social worker shall also monitor the house and the apartment to keep them clean and safe. Since the COVID-19 pandemic started deep cleaning is essential. Each family is responsible of its room, but professional services are hired to clean common areas regularly and bedrooms after a family checks out.  

- Psychological support: in hospitals the role of psychologists involves getting in touch with the nursing staff at each hospital to know about new patients and follow-ups beside the individual meetings with parents to offer information or specific support. A psychologist visits each of the three public hospitals once a week in the afternoons. Psychological support outside the hospital involves: 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. 

- Education activities: An education professional arranges everything for educational play for children (at ward rooms if the child has no medical authorization to leave the room or hospital community rooms if the child has permission to do it). These activities are offered each afternoon in the three public hospitals with the collaboration of small groups of volunteers in interaction with children. Volunteer persons attend a formation workshop on congenital heart defects and hospital protocols before they get to the hospital and interact with children and parents. 

- Early intervention activities: On this area information in crucial since knowledge about the negative side effects of heart surgery on babies’ neurological development is a rather new issue which is has not been addressed properly on past decades when focus was on solving surgical and saving babies’ life. It is a psychologist’s duty to make available objective and recent information for parents so they can detect and attend the need for early attention in their children. If the family do not have yet free attention from public Social services due to usually long waiting lists, Menudos Corazones can provide the service from a private association until they get the service.