The introduction of newborn screening for hearing has refocussed attention on the information and support needs of families with deaf children. The Internet is providing an additional resource for families to access timely and relevant information and advice. However, the experiences and attributes of parents of deaf children who search the Internet for information and support remain largely anecdotal. This study aims to bridge some of this knowledge gap.
Parents of deaf children were recruited to complete two online surveys. The Parent Survey sought to establish the demographic details and Internet use patterns of parents who use the Internet to search for information about deafness. The online Support Group Survey asked parents about their experience of participating in online support groups.
One hundred and sixty-three respondents completed the Parent Survey. Analysis of the data found Internet use is unrelated to the age of the parent, the age of their child, where they live or their employment status. Their use of the Internet is also unrelated to the type of hearing loss of their child, if their child has a cochlear implant or an additional disability or medical condition, or the method of communication used by the child. Education level of the parent, however, does influence the level of Internet use. Qualitative data indicates the need for unbiased information that is evidence-based on a range of issues that are important for families to make informed decisions regarding raising a deaf child.
Twenty parents responded to the Online Support Group Survey. They participate in online support groups for the wealth of information and the support and understanding they receive from other parents. All respondents would recommend an online support group to other parents. The respondents indicated that the benefits significantly outweighed the limitations.
The two major issues this study has highlighted is the need for parents of deaf children to receive unbiased and evidence-based information from a variety of sources, including the Internet and online support groups, and the need to ensure that parents have access to timely and reliable information irrespective of education level, socio-economic status and ethnicity.
This study provides a foundation of knowledge for service providers and hearing professionals developing Internet resources for parents of deaf children in Australia.