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Parents guide to searching for information on hearing loss

Written publications and information on the internet can provide a wonderful resource on hearing loss and treatment. Apart from information, there may also be recommendations about management of hearing loss in children. The recommendations may be based on research, expert opinions, personal experiences or assumptions.

The management of a child's hearing loss depends upon many factors, including not only the degree and type of hearing loss, but also the unique circumstances of the family themselves. These days, parents can access many sources of information about hearing loss, intervention and education for deaf or hearing impaired children. Some of these will provide recommendations about the best ways to manage hearing loss. The recommendations may be based on research, personal experiences and assumptions. Opinions or personal beliefs are valuable, but may not always directly apply to others. It's important to distinguish belief from fact that is research-based evidence.

There is a large amount of information available, but finding relevant and accurate information requires you to ask some questions of the material.

We have produced the following guide to provide you with 1) a checklist to help you sieve through all the information that is available; 2) a list of websites that can provide reliable information and 3) suggestions of what to do with the information you have found.

Your Checklist

Some things you should ask yourself when searching for information:

a) Is it current? Look at the publication date of the book or article, and for on-line articles, the date of review.

b) Is it peer reviewed? 'Peer reviewed' means that other professionals in the field have scrutinised the information before it is accepted for publication. When professionals and researchers are describing research studies and reporting outcomes, articles that have been peer reviewed are most likely to contain reliable information.

c) What is the level of evidence? High quality research aims to minimise the likelihood that bias, chance or coincidence have influenced the results. The level of evidence provided in reports can be ranked into four levels (see National Health and Medical Research Council, 1999). Systematic reviews of randomised controlled trials rank highest, followed by individual randomised controlled trials, well-designed comparative and observational studies, and finally case studies. When evidence from scientific investigation is lacking, expert opinion is the only option. Recommendations based on expert opinion should be reviewed when evidence becomes available. DISCERN (www.discern.org.uk) provides a brief questionnaire to help you assess the quality of information.

d) Is the information biased? Some reports may contain weaknesses or may leave out information, thereby resulting in biased conclusions. When researching any issue, look for information in more than one website.

e) Does it acknowledge who paid for or sponsors the site/research? Look for authors' declarations on conflict of interest or their affiliation. This may tell you something about the motivation for doing the research and hence may affect your interpretation of the opinions and findings in the report.

f) Reading about other's experiences: Remember that other people's experiences may not reflect what you will experience. Every child and every family situation is unique.

Reliable sources of information on the Internet

Sites that are hosted by government departments, hospitals and universities. Australian Hearing (www.hearing.com.au) has a range of evidence-based information sheets

Sites that are hosted by major peer-reviewed journals

Sites recommended by your audiologist, teacher or doctor

Sites that are endorsed by the Health on the Net Foundation Code of Conduct (www.hon.ch).The blue-and-red HONcode seal on a website identifies it as a reliable source of information, as assessed by the Foundation

www.aussiedeafkids.org.au offers information to parents on searching the internet and also parent forums for exchange of experiences

What to do with the information you find

Combine your research with professional advice. While the internet, publications and the media can provide very good information to help you understand your child's hearing loss, remember that they are not a replacement for professional advice.

a) Discuss with your family audiologist - you may have found different opinions and options that may or may not be suitable for your own child. Your audiologist considers many factors, including the degree and type of hearing loss of your child and the unique circumstances of your family to identify what may be most suitable for your child.

b) Make informed decisions - All families and hearing impaired children are different, and you have the right to make informed decisions that meet your family's needs. This is an on-going process, because what is best for your child may change as your child grows. The publication, Helping you choose: Making informed choices for you and your child was developed by the National Deaf Children's Society (UK) and the University of Manchester, and can be downloaded at this link:

www.dcsf.gov.uk/everychildmatters/