PSYCHOSOCIAL SUPPORT TO PID PATIENTS AND RELATIVES

Expert psychological support is offered to children with a PID and their families in a suitable environment and with an optimum material to achieve better clinical outcomes and to promote their quality of life. Special attention is given to parents of newborns diagnosed of SCID through newborn screening that may require stem cell transplantation (STC).

  • Project: "I have PID. I'm not alone" (Obra Social La Caixa).
  • Target audience: PID patients and their relatives.
  • Access to the beneficiaries: Through the patient's reference health center.
  • Human resources: One fully-dedicated psychologist.
  • Objectives: To provide psychological support to pediatric patients with a PID and their families during their evolution, from the diagnosis of the disease to healing (if it occurs) or until the stabilization of their chronic illness, offering comprehensive care. Special attention to parents of newborns diagnosed of SCID through the newborn screening (NBS) that may require Stem Cell Transplantation (SCT) or gene therapy (GT) is given.
  • Activities: Individual, family and group sessions with a variable frequency depending on the needs and different moments of the patient's process (diagnosis, revenues, complications, treatments, palliative processes). Immediate and continuous attention is offered to the parents of newborns diagnosed of SCID through newborn screening (NBS) that may require SCT or GT.