Comprehensive Support To Families Of Kids With Congenital Heart Diseases In Spain

Project location: SPAIN
Project start date: June 2012 - Project end date: May 2013
Project number: 2012-012
Beneficiary: Fundación Menudos Corazones

TIMELINE OF THE PRESENT ACTIVITY REPORT: From 1st May 2012 to 30th April 2013

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 includes accommodation free of charge of the families who have to travel to Madrid to get medical attention, psychological support in the hospital and outside, both right after hospitalization and on the longer term, as well as educational and recreational activities in hospital ward and rooms for kids and parents. The program includes 2 psychologists, 1 external consultant (psychologist), 1 social educator, 1 coordinator for accomodation as well as the renting and management of up to 9 rooms for families (until august 2012), 13 rooms (from september 2012) and 15 rooms (from april 2013).

Activities implemented in the final phase of the project

1. Management and organization of accommodation free of charge of the families who have to travel to Madrid to gel medical attention: management of accommodation petitions, reception, registration and accommodation of families in the houses/hotel, follow-up of the families, supervision of rules accomplishment, communication with the psycho-educational department of Menudos Corazones who work in hospital for the follow-up of the situation of the families, farewell of the families, statistical treatment of data of the beneficiaries and satisfaction evaluation's questionnaires concerning accommodation.

Methodology applied: The family is in Madrid or has to travel to Madrid. Contact with Menudos Corazones (family or social worker/sanitary staff of hospital). Three options: 1) Availability in hotel. Acceptance of the service by the family, reception and registration of the family in Menudos Corazones office and pass for the hotel. Presentation and reception in hotel. Accomodation. Devolution of hotel pass in Menudos Corazones office. 2) Availability in houses. Acceptance of the service by the family, reception and registration of the family in Menudos Corazones office and keys for the house. Reception in the house and accomodation. Devolution of keys in Menudos Corazones office. 3) No availability. Waiting list. Availability in any of the two accomodation resources. Contact with family/social worker/sanitary staff who call for accomodation.

2. Psychological attention in hospitals: meetings with parents of kids with congenital heart diseases, follow-up of the emotional situation of parents and children, psychological interventions with parents and children, psychological attention to the families in the moment of losing a child.

Methodology applied: Psychologist goes to hospital. Meeting with cardiology sanitary staff, patients visit by psychologist, psychological support/interventions, follow-up of patients (kids)/parents in long-term, Intensive Care and Neonatology Units, individual/group meetings with parents.

Psychological attention out of hospitals: phone and e-mail attention for information of medical and social resources, emotional support and contact with other families, follow-up of families after surgery/hospitalization, therapeutic sessions with parents and children, psychological attention to the families who have lost a child through self-help groups.

Methodology applied: meetings of psycho-education department, registration of patients/interventions data, psychological support by e-mail or phone, individual and group meetings with parents/kids in Menudos Corazones office, self-help group meetings for parents who have lost a child.

Educational and recreational activities in hospitals: management and training of volunteers, creative and artistic activities for kids, traditional play with kids, dramatic play activities with kids, massage and estimulation activities with babies and kids (under 3 years)/parents, management of support group for families with special needs.

Methodology applied: Social educator goes to hospital. Meeting with sanitary staff and exchanging information of patients with psychologist of Menudos Corazones, meeting with volunteers for activity planification, patients visit, group/individual activities for kids, meeting of social educator with volunteers for evaluation of activities, patients/interventions data registration.

Results obtained

*164 families of kids with congenital heart diseases who have to travel to Madrid to get medical attention accommodated free of charge in Menudos Corazones houses and in NH Hotel Alcalá rooms. This means a total of 328 beneficiaries (persons) for accommodation.

*3.547 psychological interventions have been done in hospitals and out of hospitals. This means a total of 1.606 beneficiaries for psychological attention/support.

*2.212 educational and recreational activities have been done in hospitals. This means a total of 1.149 beneficiaries for educational and recreational activities in hospitals.

All these numbers mean that:

-Menudos Corazones have been able to attend the 80% of the families which have asked for accommodation supporting them economically and reducing the costs they have to face during the hospitalizations of their kids.

-The improvement of accommodation's conditions of the parents influences positively in their personal wellbeing, physically and psychological, improving also the relationship with the sanitary staff.

-Menudos Corazones has achieved that the parents and their relatives do not sleep in the waiting rooms of hospitals, which has influenced positively in the healthiness of the hospitals.

-Menudos Corazones has offered the families affected by a congenital heart disease a space/time to express and talk about their fears and worries generated by the illness of their kid, accepting it and assuming in a more positive way.

-Menudos Corazones has facilitated the interaction/communication between parents which are facing similar situations, improving their emotional situation, by sharing their experiences.

-Menudos Corazones has given the families affected by a congenital heart disease conduct examples in order to normalize their lives.

-Menudos Corazones has contributed to the integration of families in hospitals and the improvement of their communication with the sanitary staff.

-Menudos Corazones has prepared and has given emotional security (through individual sessions) to the families affected by a congenital heart disease in order to face long term hospitalizations.

-Menudos Corazones has given company, security and psychological attention in difficult moments, such as operations or deaths in hospitals.

-Menudos Corazones has been available for the families during all the hospitalization process and in the moment of return home offering them support in any moment.

-Menudos Corazones has covered psychomotor needs of kids with congenital heart diseases due to hospitalizations through an educative-fun activity.

-Through relax and play techniques, Menudos Corazones has helped reducing tension, frustration, angriness, suffered by hospitalized kids, contributing to reduce the negative repercussions of the illness and hospitalization.

-Menudos Corazones has complemented the work of sanitary staff offering creative techniques and resources for the integral wellbeing of the families.

-Menudos Corazones has offered the relatives of the patients a time and space where they can relax, giving them more emotional and physically stability.

-Through play techniques, Menudos Corazones has taught parents how to be close to their kids in the difficult moments.