The Catalan Association for Primary Immunodeficiencies (ACADIP) and the Barcelona Foundation for Paediatric Patients with Primary Immunodeficiencies (BCN-PID Foundation) have once more demonstrated their support for research in the “Tinc una IDP; No estic sol” project through a donation of €32,130. The study, which is being carried out by the Infections in Immunocompromised Paediatric Patient Research Group of the Vall d'Hebron Research Institute (VHIR) led by Dr Pere Soler, has also been supported by the “La Caixa” Foundation since 2015.

The “Tinc IDP; No estic sol” programme offers comprehensive care and psychological support to patients suffering from a primary immunodeficiency (PID) and their families. Its objective is to make it easier for children, adolescents and their families to cope with the disease in all its areas of impact. In addition, research on the psychological aspect and on the impact of PIDs is encouraged through the establishment of annual research projects that seek to improve the quality of life of patients and their families.

The project is being coordinated by the psychologist Laura López Seguer from the Infections in Immunodepressed Paediatric Patients Research Group of the VHIR, who has experience in the paediatric-child, hospital and family care areas. “During the visits, we help patients and their families to accept and comprehend the diagnosis, adhere to treatment and deal with the anxiety that some diagnoses can trigger. The objective is to safeguard the emotional wellbeing of the children and their family members and to preserve their quality of life insofar as possible. We don't want them to feel “alone” in this constant journey of coping", she stated. “Our focus is on the patients. We want to offer a care that is focused on them and their wellbeing”, added Dr Pere Soler.

“More and more parents and children are benefiting from this project, and we will work to keep it going. Without a doubt, psychosocial support is essential”, stated Carlota Villar, vice-president of the BCN-PID Foundation. “Immunodeficiencies are highly debilitating diseases. Receiving support and accompaniment is key to improving the lives of those who are affected by them”, said Esther Ferrer, secretary of the ACADIP. 

 “I have a PID; I’m not alone”

To date, 254 people (94 patients and 160 relatives) have received continuous care that is adapted to the clinical, social and psychological circumstances of each person as part of the “Tinc una IDP; No estic sol” programme. The follow-up is defined in accordance with the severity of the cases and the need for intervention, on both an outpatient and inpatient basis.

The Psychological Care Service has its own office for patient visits. It also has a range of specific material for paediatric patients (stimulation and explanatory material) as well as toys, story books and four tablets (two of which have internet connection), which help to keep patients entertained during their admission to the ward and to the day hospital.

Patients and family members who live far from the hospital can also receive care in the form of video and telephone calls. Group interventions and social activities are carried out with patients, while psychological treatment sessions are also offered for small groups of patients with similar characteristics and diagnoses in order to facilitate the creation of mutual help networks.

The “Les IDP a l’escola” [PIDs at school] programme is also being carried out at a community level, with interventions in the schools of these patients and those who wish to collaborate on the project.

Thanks to the support of the “La Caixa” Foundation, the team has taken significant steps forward in the project. The next step is to apply it to adult patients and offer the service online.

ACADIP and the BCN-PID Foundation: two entities that support people with primary immunodeficiencies

ACADIP is an association that brings together and supports people diagnosed with all kinds of primary immunodeficiencies and their families in Catalonia. One of its objectives is to work and collaborate with the scientific community in the field of research, helping these patients to have a better quality of life.

The BCN-PID Foundation is an entity whose main objectives are the promotion of excellence in the knowledge, study, research and awareness of primary immunodeficiencies and the infectious complications that paediatric patients affected by PIDs may experience, as well as excellence in their comprehensive care that will help to improve their quality of life.