Introduction and Information Page

Information Statement for Parents and Professionals in the Research Project:
An investigation of services for Australian children with a hearing loss and the National Disability Insurance Scheme -  Document Version 4 Dated 10/11/17

You are invited to participate in the research project identified above which is being conducted by Megan Barr, from the University of Newcastle. The research is part of Megan’s PhD studies at the University of Newcastle, supervised by Dr Kerry Dally and Dr Jill Duncan from the University of Newcastle.

Why is the research being done?

The purpose of the research is to identify the services children with a hearing loss are able to access in all areas of Australia. The research will also look at the experience or expectation of the National Disability Insurance Scheme (NDIS) across Australia. This information will inform service providers and governments to ensure that all Australian children with a hearing loss are receiving the specialist service they need, regardless of where they live.

Who can participate in the research?

We are seeking parents of 0-12 year old children with a hearing loss to participate in this research. We are also seeking professionals who work with these children, including audiologists, mainstream teachers, speech pathologists, teachers of the deaf, special education teachers, psychologists, occupational therapists and other relevant professionals.

What would you be asked to do?

If you agree to participate, you will be asked to complete a survey about your experience of the accessibility of services for children with a hearing loss in the area where you live or work. The survey should take about half an hour. The survey is available online or a paper copy is available through your service provider. If you prefer to talk with someone, you can ring Megan and she will ask you the questions over the phone.

       The surveys will ask about services for children with hearing loss in the area that you live or work and your experience or expectations of the National Disability Insurance Scheme (NDIS). Some questions will also ask for general information such as occupation and your level of education. These questions will be asked because other studies have found these factors might affect the level of support and intervention received by children.

       At the end of the survey you will be asked if you would like to give more information in an individual interview about your situation or particular issues affecting services for children with a hearing loss in the area where you live or work.  If you choose to participate in the interview, it will be conducted at a time convenient to you. You can choose to have the interview over the phone or via a video conferencing platform (e.g.) Skype and it will be audio recorded. You are also asked to forward a survey link to parents of children with a hearing loss, or professionals and mainstream teachers who work with children with a hearing loss.

How much time will it take?

The survey should take about half an hour to complete. If you choose to participate in an individual interview, this will take approximately 30-45 minutes

 What choice do you have?

Participation in this research is entirely your choice.  Only those people who give their informed consent will be included in the project.  Whether or not you decide to participate, your decision will not disadvantage you. If you do decide to participate, you may withdraw from the project at any time prior to submitting your completed survey. Please note that due to the anonymous nature of the survey, you will not be able to withdraw your response after it has been submitted.
What are the risks and benefits of participating?
There are no anticipated risks associated with participating in this research. By participating in this questionnaire you will have the opportunity to share your views on the quality of services offered to children with a hearing loss that may help to improve the quality of services offered for children with a hearing loss. A $300 Coles group gift card will be awarded as a prize to one randomly selected survey participant.

How will your privacy be protected?
The collected data will be stored securely on a password protected computer in the Chief Investigator’s office. Data will be retained for a minimum of 5 years as per University of Newcastle requirements. Due to the anonymous nature of the survey the responses you provide will not be identifiable unless you also volunteer to be interviewed. If you enter the prize draw for the Coles Gift Card, your contact details will not be linked to your survey responses so your responses will remain anonymous.

If you volunteer for an interview, you will be asked to provide your name & contact details at the end of the survey. This means your survey responses will not be anonymous, as we will use some of the demographic data you provide (e.g. location) to select a range of interview participants from rural, regional & remote areas. Names on surveys & interview transcripts will be replaced by numbers & codes for storage. An external private service will be contracted to transcribe the interviews & they will be required to sign a confidentiality agreement. Interview participants will be given the opportunity to review their transcripts.

How will the information collected be used?
The collected data will be submitted in a thesis for Megan Barr’s PhD and will be presented in academic publications & conferences. Non-identifiable data may be shared with other parties to encourage scientific scrutiny & to contribute to further research & public knowledge, or as required by law.

You can access a summary of the results of the research by e-mailing Megan six months after the survey is completed & a video summary of the results will be sent to service providers. Individual participants will not be named or identified in any reports although individual anonymous responses may be quoted.

What do you need to do to participate?
Please read this Information Statement & be sure you understand its contents before you consent to participate. If you are completing the online survey please click on the link below.  If you would like to talk through the survey over the phone, please contact Megan on 0474 112164. Completion of the survey will be taken as your implied consent to participate.

If you volunteer for an interview, Megan will contact you to advise whether you have been selected and to make arrangements if you are still willing to participate.

Further information
If you would like further information please contact Megan Barr or 0436 385 269 or her supervisor

Thank you for considering this invitation. 

Dr Kerry Dally, Dr Jill Duncan & Megan Barr. 

University of Newcastle

Complaints about this research
This project has been approved by the University’s Human Research Ethics Committee, Approval No. H-2017-0239. Should you have concerns about your rights as a participant in this research, or you have a complaint about the manner in which the research is conducted, it may be given to the researcher, or, if an independent person is preferred, to the Human Research Ethics Officer, Research Services, NIER Precinct, The University of Newcastle, University Drive, Callaghan NSW 2308, ph: (02) 4921 6333, email