Empowering parents in El Salvador

Norma and Eduardo Palacios with
their son.

Eduardo and Norma Palacios, the parents of a seven-year-old with hemophilia A, said that the Parents Empowering Parents (PEP) Program enabled them to make major progress in the care they provide at home with their child. "We have overcome feelings of pain, developed our self-esteem, and become familiar with when we should take him to the hospital; now we are more responsible regarding our child’s care and dealing with his hemophilia. We have learned how to work as a couple to help our son and understand that we are not to blame for our son’s illness."

Ten parents of children with hemophilia who are treated at the Benjamin Bloom National Children’s Hospital (Hospital Nacional de Ni–os Benjam’n Bloom) in San Salvador, El Salvador, gained valuable skills through PEP last year. PEP was introduced by a nurse and a social worker at the hospital after they completed a training course in collaboration with the Gulf States Hemophilia and Thrombosis Center in Houston, U.S.A. Through interactive sessions and participatory exercises, PEP provides parents of children with bleeding disorders the opportunity to enhance their ability to deal with the psychosocial aspects involved in raising a child with a bleeding disorder. Additionally, PEP offers parents the opportunity to share experiences and support other parents who are experiencing similar challenges.

Dr. Ana Gladis de Reyes, a pediatric hematologist at the hospital said, "Participants have expressed that, by sharing experiences with other parents, they have been freed of their feelings of guilt and pain and they have accepted the bleeding disorder, enabling them to improve the care of their child."

The Palacios were so impressed and inspired by the program that they have now become facilitators themselves. “We are convinced that when we talk about our experience with other parents, we are helping them lift the weight they are carrying. We received support and now we are ready to help others.”

Hemophilia World, August 2011