Families with children with rare diseases have to face many challenges in their daily lives. In addition to the complications involved in assuming that your child has a little-known disease, they must immediately face the difficulties of having a definitive diagnosis or specific treatment. Lack of knowledge of the disease also poses new challenges for families, both in health and school settings. ABAIMAR is the Balearic Association of Families of Children with rare diseases that involves 100 families.
On the other hand, despite efforts to incorporate a social approach to physiotherapy, still today university education in physiotherapy largely follows a biomedical paradigm. For this reason, the subject of “Ethics in Health Sciences” attempts to open up the spectrum of meanings and practices involved in being a physiotherapist from a social justice perspective.
The learning objective of this service-learning project is to sensitize students to the true needs of families of children with rare diseases, beyond the necessary but insufficient focus on the child’s disease. Understanding the meaning of health equity in a real situation is also a key objective in this project.
As for the service, the ABAIMAR association asked us to have reports on the needs of families in order to contextually identify family requirements.
The project therefore included the development of home visits by physiotherapy students, so that they were able to spend time with the families and prepare a family report on their needs taking into consideration a script prepared previously in collaboration with the ABAIMAR professional team, made up of two physiotherapists , a psychologist and a social worker. A total number of 44 students visited 15 families and prepared a report to ABAIMAR. Final presentation of the project took place during a conference on rare diseases developed in the university, where two students and the responsible person of the project explained it to the audienced composed of families, students and professionals in health and education.