A speechless collaboration: Deafness in Tunisia
Hearing Impairment (HI) is one of the major health problems worldwide. The 2014 national census reported that 37% of the Tunisian with disabilities (2.3% of the whole population) are children; among them 16% have auditory disabilities.
Despite several efforts made so far for better childcare, the absence of communication between the various stakeholders dramatically impacts on the management of hearing Impairment in early infancy in Tunisia.
The Institut Pasteur de Tunis Science Shop “Science together”, created in 2017, aims to implement innovative and collaborative research projects between Tunisian associations and researchers based on concerns brought forward by civil society representatives.
Within the framework of the call to express social needs, launched by “Science together”, ICHARA (Signs in Arabic) —an association involved in promoting better education for children with deafness— submitted the request to identify an effective way for the early detection of Hearing Impairment (HI) among various age groups.
During eight months, a Bachelor student was selected to perform the Science Shop project with ICHARA and the laboratory of Biomedical Genomics and Oncogenetics (IPT), together with various stakeholders from their network: the Department of Congenital and Hereditary diseases (the University Hospital Charles Nicolle), the department of ENT (the University Hospitals La Rabta and Habib Thameur) as well as decision-makers from the Tunisian Ministry of Health.
The project included 304 children aged between four and six years-old from Northern Tunisia (Ras Djebal-Bizerte), who underwent for the first time in their lives the following tests: a Quick Ear check-up, the audiometric tests (subjective and objective audiometry, Acoustic Oto-Emission and acoustic impedencemeter tests) as well as the speech therapy tests (speech-language assessment: words, sentences and language).
Results showed that 37 children (12.17 %) presented hearing impairment (33 conductive, two sensorineural and two mixed). The ear examination showed one malformation of the external ear, 11 impacted cerumen and two ear discharge. The audiometric tests showed the occurrence of 33 children with conductive HI, two with mixed HI and two sensorineural HI (30 mild, six moderate and one severe). The speech-therapy tests showed that 14 children presented articulation disorder, 10 with language delays, five children presenting speech delays.
The children have been referred to the ENT Department for appropriate management and care.
Thanks to the support provided by “Science Together”, ICHARA and collaborating researchers were able to conduct a preliminary field study and mobilize various stakeholders. Taking into account the various challenges encountered by the families with HI, this trans-disciplinary team is now willing to tackle this public health problem by establishing their own Science Schop on auditory health. The new ICHARA Science Shop will lead to the establishment of a national strategy for auditory health and education for people with HI.
The experience of “Science Together” projects showed that Science Shops provide not only an appropriate environment for Participatory Action Research by building a bridge between researchers and civil society organizations but also helped to unite several stakeholders including decision makers and family representatives for advocacy for a common cause.