SWK-01. Partnership between caregivers, patients and healthcare professionals: promoting collaboration in a complex care pathway in pediatric neuro-oncology

Abstract

Children with a brain tumor and their families encounter, from the moment of diagnosis, a complex, multidisciplinary and multisite journey. Oscar's Angels (OA) is an association of trained patient advocate volunteers within a hospital structure who provide daily support to pediatric neuro-oncology patients and their families in complex care pathways. The association promotes collaboration in healthcare by facilitating a strong link between the daily reality of patients and their families and that of the hospital. OA volunteers are active and fully accepted members of the hospital multi-disciplinary team and collaborate on a very high level in the care of pediatric patients. Such a collaborative setting is possible because the work of OA is structured around three principles: Innovative, practical and theoretical initial and ongoing training and quality assessment of volunteers Patient and family support from Oscar’s Angels volunteers throughout the care pathway Government certification, institutional representation and active collaboration in educating healthcare professionals about the importance of patient advocacy and patients’ needs Operating in France since 2001 and in Italy since 2017 (with more than 600 and 200 families respectively supported last year), the OA volunteering program is specifically tailored to the needs and demands of hospitals and families. It can therefore be successfully reproduced in many settings. OA’s services come at no cost to hospitals. This is particularly important for implementing the program in developing countries where healthcare resources are extremely limited. But it is also relevant in developed countries as well where healthcare budgets are under strain. In 2020 an informal internal OA survey highlighted that the patient/family/volunteer/healthcare professional interface provides added value for all of these stakeholders. A formal survey will be conducted in 2022 to corroborate these results.