Children need family care to receive affection and learn to give it and, in this way, grow up healthy, incorporate and enjoy the values of their culture, learn to face challenges and recognize their potentialities. They also need people who meet specific needs at the same time that they require the commitment of society and its institutions to support their growth and facilitate development opportunities. Along these lines, the model of “Family Centered Care” (CCF) aims to improve the quality of life of the little ones.
When a child falls ill, the family rearranges its entire emotional and economic strategy for its care. Likewise, a qualified health team accompanies and provides the necessary support for the little one to regain his health, and the family, well-being.
To achieve this goal, the “Family Centered Care” model brings the patient and their family together with a health team. It is a group of professionals involved in making decisions about the medical care and support services received by the child and their family. All aspects are aimed at supporting the family and achieving the objective of improving the quality of life, psychological well-being, clinical results and the general experience of the child during hospitalization.
In relation, committed to children’s health since 1993, Casa Ronald Argentina resumed the analysis and dialogue with health professionals on the concept of “Family-centered care”. This is due to the reconversion challenge that prompted the pandemic and the trajectory of work, research and dissemination.
To this end, two Latin American meetings were held that featured presentations by Dr. Audrey Evans, co-founder of the Ronald House in Philadelphia; Dr. Linda Franck of Ronald McDonald House Charities (RMHC); and the experience of different Argentine pediatricians – members of the Ronald House Medical Committee in Argentina – such as Dr. Fina Rodríguez (MN 50411), former Executive Director of the Garrahan Hospital; Dr. Jorge Gabbarini (MP 1081), former Executive Director of Sanitary Region I (province of Buenos Aires); Dr. José M. Pujol (MP 19578), former Executive Director of the Sor Ludovica de la Plata Children’s Hospital; Dr. Susana De Grandis (MP 14987), former head in charge of the Department of Pediatrics at the Hospital de Niños de la Santísima Trinidad in the province of Córdoba; and Dr. Mónica Makiya (MN 68728), Head of Bone Marrow Transplantation of the Department of Pediatrics of the Italian Hospital of Buenos Aires.
One of the points discussed in the meetings was what pediatricians learn from families during the treatment of their children.
“Parents know their children, especially in the processes with chronic diseases. Parents learn to treat them and this represents a great opportunity to work together with professionals for the benefit of the well-being of the patient ”, explained Rodríguez.
For his part, Gabbarini indicated: “Support the family, give them a place to live, give them support. Putting listening there and solving problems that sometimes for others are minor and for families represent real challenges ”.
In addition, the meetings had the participation of Dr. Diana Fariña (MN 62121), head of Neonatal Intensive Therapy at the Garrahan Hospital and the testimony of families staying at the Ronald House -in different stages of the treatment of their children- and more than 30 professionals, among them, doctors, nurses and social workers corresponding to 10 countries in America.
“Parents do anything for their children. When we discharge the children, the parents become nurses, they have to give injections, change the tubes that feed them, and we know that they are going to learn it, we have infinite confidence that this family is going to dedicate all the time that he has to take care of his son, ”said Fariña.
As the specialists commented in the meetings, the importance of CCF in neonatal therapy today is based on the fact that it was shown that the permanence of the parents with the child during hospitalization is a neuroprotective factor in his lifeConsequently, the child is more emotionally stable, has better neurodevelopmental patterns and improves breastfeeding.
“If we do not know the socio-environmental reality of the patient, many of the treatments that we develop cannot be carried out. The fundamental thing is to work with the family ”, clarified Pujol.
History of the concept of “Family Centered Care”
The incorporation of Family Centered Care (CCF) in the field of pediatric health varies over time, since the installation of the issue in public policies depends on each country and the degree of involvement and execution of health institutions and the professionals.
For example, in Argentina, in 1958 Dr. Florencio Escardó instituted “joint hospitalization”, that is, mother and child, at the Ricardo Gutierrez Children’s Hospital. Later, the concept of “Open Doors” was added to Neonatal Intensive Therapies. Little by little the CCF established itself in these areas, which warned pediatricians, as explained by Dr. Diana Fariña, that “children whose mothers were with their children throughout hospitalization did better in neurodevelopment”.
Therefore, the specialist described that “the current concept is that parents are not a visitor in Therapy, but are partners in the care of the child.” In short, the health team is responsible for the health of the child and his family, at the same time that the parents help take care of the patient.
In that sense, work experience at the Ronald Houses also precedes the CCF concept, because since its origins in Philadelphia (United States) in 1974, it provides a hosting service for the family group of children hospitalized for treatment of complex diseases, which prioritizes the emotional support of their parents, siblings or grandparents. Likewise, it seeks to guarantee the bond with their peers, the continuity of their school education, the maintenance of a home atmosphere of proper care and hygiene and a rest space for the whole family in the company of other groups that are experiencing a similar situation.
In relation, the Castro Castillo family highlighted: “Beyond solving the problem of where to sleep, the containment and support that La Casa has given us is very important to us. At La Casa Ronald you feel more accompanied, calmer, by the company of other families and also because from La Casa they do everything to help you”.
The Ronald House of Argentina enriched its experience at the CCF by promoting research grants and contributions of results that were published in the Argentine Archives of Pediatrics, which gave scientific endorsement.
Regarding the contribution that the CCF generates to the health of the little ones, De Grandis revealed: “I learned from the children the resilience, the hope that everything will improve and the unconditional support of the parents.” Finally, Makiya concluded: “The day ends and I always take something with me. I have been dealing with children who fight for their lives at all times for a long time, what I learned from them is to love and respect life ”. Therein lies the importance of joint patient care between family members and medical specialists.
Those who wish to know more information about the meetings, can enter the following link.