Ethics and Family Resilience for Integral Care in the field of Rare Diseases

Abstract

In contemporary societies, children and young people with rare diseases have disability barriers and social exclusion. How to build an ethical, resilient and empowered character in their families that allows them to improve their quality of life? To answer this question, INèDITHOS, a project of Hospital Pedagogy, aims to enhance their quality of life through intervention and educational and technological research from a university setting in Mallorca, Spain. In this context and in the framework of research of a doctoral thesis, we claim to build interdisciplinary ethical principles so that they serve as reference to the different professionals that participate in the field of Hospital Pedagogy and that support families with a member with a rare disease. The methodology of the research is being carried out in three phases: a) systematic review of the current scientific literature about the relationship between ethics, family resilience and community empowerment; b) focus groups for discussion with health, education and psychosocial professionals that assist families with a member with a rare to cartograph their perspectives on integral care for this sector of the population; and c) analysis from a social critical theory to propose ethical principles in Hospital Pedagogy. For this communication we will explain to the advances in our research, which is part of the first objective of the doctoral thesis. Therefore, the expected results of this field are to build a coherent theoretical framework to cartograph and to analyse the perspectives of professionals involved in the integral care of families with Rare Diseases.