The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases

Sebastià Verger, Francisca Negre, María Fernández-Hawrylak and Berta Paz-Lourido
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Sebastià Verger: Department of Applied Pedagogy and Psychology of Education, University of the Balearic Islands, 07122 Palma, Spain
Francisca Negre: Department of Applied Pedagogy and Psychology of Education, University of the Balearic Islands, 07122 Palma, Spain
María Fernández-Hawrylak: Department of Education Sciences, University of Burgos, 09001 Burgos, Spain
Berta Paz-Lourido: Institute of Research and Innovation in Education (IRIE), University of the Balearic Islands, 07122 Palma, Spain

IJERPH, 2021, vol. 18, issue 12, 1-13

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.

Keywords: communication; interprofessional coordination; rare diseases; pediatrics; educational inclusion (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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