"I have PID: I'm not alone". Psychosocial support to patients and families

November 2016

One year after the implementation of the "I have PID: I'm not alone", a project that offers psychosocial support to children with PID and their families, a review was made to evaluate the work done. A satisfaction survey was carried out to patients (over 12 years of age), family members and professionals who participate in the comprehensive care of patients with primary immunodeficiency.

The results have been excellent, highlighting a positive evaluation of the treatment received, the professionalism of the work carried out and the support offered in the process of the illness suffered by the children and their families. The proposed improvements aim to improve the outpatient spaces and extend the hours of psychosocial attention.

Eunice Blanco, director of the Public Service and Social Work Unit in the Maternity Area of VAll d'Hebron Campus Hospitalari, affirms that "the project greatly improves the quality of care and welfare of children with PID and their families."

Julia and Ivan, parents of a child with PID, stated that "the psychological attention received has been very satisfactory and suggest having a specific space adapted for children to carry out the psychological sessions".

The objective of these surveys was to obtain information on how the project is being conducted and how to optimize the resources. It is intended to give voice to patients to understand their needs and demands.