Beyond diagnosis of hearing impairment : parent support and information in Malta

Abstract

The aim of this study is to explore how parents in Malta and Gozo can be supported when their children are diagnosed with a hearing impairment. The social model of disability provides insight into the disabling tendencies of society (Oliver M. , 2004) . Dowling and Dowlan (2001) demonstrate how social organisation disables the child who has an impairment as well as the whole family as a result of social barriers, prejudices, and the way services are provided. Through an action research approach within the social model of disability, this study engaged parents of children with a hearing impairment in focus groups and interviews. Parents gave their recommendations for improved support and information from their own experiences and point of view. They reported that many services do exist but it is difficult to access them without proper information and support. This resulted in their recommendations for a directory leaflet which could facilitate this process. The participants were also involved in the evaluation of the drafted leaflet. Furthermore, they recognised the need for parents to meet other parents. This led to the setting up of an online parent-to-parent group where parents could find informal support. The parents recognised that these efforts would not be enough to remove social barriers and therefore also made recommendations for policy and practice. The late diagnosis of children in Malta and Gozo is a barrier for children’s language and social development. Parents would like to see new-born hearing screening in place for all children in Malta and Gozo. Parents also strongly suggested that professional counselling should be made available to parents receiving their child’s diagnosis in the future. Furthermore, service coordinators who could provide unbiased information about the parents’ options may help parents feel more in control and empower them to make informed choices. A national strategy on the provisions for children with a hearing impairment and their families could help ensure increased awareness campaigns for the public and professionals working with children along with training, improved services and the opportunities for children to participate fully in society.