Support for parents to create opportunities for social participation of their deaf children
The EU-funded CDEVEM project worked to improve parents make decisions related to care, education and family life for their deaf child and how they support their child’s social participation. The study approach did not include the notion of “normal development” but focused on the opportunities children get to participate in education, leasure, family life, regardless of what is considered to be “normal” in society. This includes children who use sign language as a first language and children who have multiple disabilities in addition to their hearing loss. Building on a 2012 study on parents’ actions and experiences regarding deaf and hard-of-hearing children, the project researched parents’ decisions regarding relevant care. It also looked at how related organisations affected these decisions, considering as well the input of parents, deaf children themselves and their teachers. The project team met with stakeholders and conducted 20 interviews in Iceland examining how parents make decisions related to care, education and family life for their deaf child and how they support their child’s social participation. This led to the elaboration of recommendations for early intervention professionals and articles published in notable journals. CDEVEM highlighted access to knowledge and information, which is pivotal for parents’ ability to make decisions on education, assistive devices, rehabilitation care and therapy. Parents who actively engaged in interactions with diverse stakeholders and who used professionally valued discourses about their child’s best interest tended to gain enhanced access to people and knowledge on the topic. Second, creating opportunities for parents to lead the implementation of decisions related to care, education and family life is crucial for for parents to be able to influence how the deafness or hearing loss of their child is given meaning. For example, parents can help improve the choice of accommodation at school and encourage flexibility in reassessing or making changes if needed. Parents’ opportunities to be in charge of support and collaboration, rather than putting the onus on professionals, can also work in the interest of the child. CDEVEM clearly demonstrated how the identity of children who are deaf or hard-of-hearing is socially constructed depending on parents’ relations with knowledge and actors in the field.
Keywords
Parents, deaf children, hard of hearing, CDEVEM, deafness
