Access to Information
Beginning the Journey: Gathering and Receiving Information
The first weeks or months after a child's diagnosis of hearing loss are emotionally difficult for families. Families have to make important decisions early in the child's life, making access to timely, unbiased, relevant and culturally sensitive information a fundamental need for families.
Information about hearing loss, communication options, available services and potential outcomes reaches families in a variety of ways. Families overwhelmingly preferred face-to-face interaction as the most effective communication method.
Internet sources are fast becoming the standard for information gathering, particularly static content, but blogs and personal or community-based online sources were often seen more positively than sites with pure facts and static content.
Effectiveness of Communication Channel
Although social media rated the lowest as a source of information, its use is increasing over time. Parents with children under the age of 5 rate the use of social media significantly higher than parents of children age 6 and older.
While most parents suggested that they did feel fully informed prior to making decisions about communication and language options (average rating of 3.88 on scale of 1-5), a large number of parents (42%) commented on ways they would have changed either what information they received or how they received it.
Despite available information, families often reported a sense of feeling alone and expressed a desire for a road map, including longer-term expectation setting around service availability and outcomes. Parents described the need to manage a difficult, complex and often confusing net of information and services which frequently required out-of-pocket expenses.
Speech-language pathologists and Listening and Spoken Language Specialists (LSLS®) were rated the highest in terms of effectively explaining the issues and helping parents on the path to developing listening and spoken language for their child. However, less than half of respondents noted access to LSLS professionals.
Who Explained the issues, Answered Questions and Provided Guidance?
Sources of Information for Families In the First Six Months Following Diagnosis