Abstract
Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.
Highlights
Rare or infrequent diseases (RDs) usually affect sufferers from birth or from a very young age and are generally chronic and without curative treatments
These nine categories refer to intersectoral coordination, knowledge about rare diseases, healthcare providers, communication with families, communication with students, interprofessional collaboration, specific support, school size and protocols for communication
Intersectoral coordination between schools and health services is scarce and fundamentally related to health emergencies, since schools must have an established intervention protocol that is known to teachers: “If we have to intervene, we already know which specific injection to administer, that it is in Management, that we have to notify the head of studies, that he will notify the family, that they will take [the child] to the doctor, etc.”.(FG_2b)
Summary
Rare or infrequent diseases (RDs) usually affect sufferers from birth or from a very young age and are generally chronic and without curative treatments. It is often difficult to obtain information about these conditions that would make it possible for families to cope with the disease because they are unknown or understudied diseases, and many of them do not have a specific treatment [1,2] They are called RDs because each disease affects less than 5 out of every 10,000 inhabitants, there are approximately 7000 diseases called RDs, including different types of genetic diseases, some types of cancer, autoimmune diseases and congenital defects, among others [3,4]. Despite their heterogeneity, they share a number of common features. A late or nonexistent diagnosis; the absence of specific medication; and the lack of information on the characteristics of the disease, its evolution and its social–
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