EXPLANATORY STATEMENT
Project: Early intervention for young children with autism spectrum disorders: The parental experience of assessing and accessing suitable treatment for young children in Australia
Chief Investigator: Dr John Ehrich
Faculty of Education
Phone: +6 03 9905 2809
email: john.ehrich@monash.edu
Co-Investigator: Dr Marc Pruyn
Faculty of Education
Phone: +6 03 9904 4325
email: marc.pruyn@monash.edu
Student Investigator: Ms Jacqueline Gately
email: jrgat1@student.monash.edu
This information sheet is for you to keep
As a parent or primary caregiver of a young child with a diagnosis of an autism spectrum disorder or similar therapeutic needs, you are invited to take part in this study. Please read this Explanatory Statement in full before deciding whether or not to participate in this research. If you would like further information regarding any aspect of this project, you are encouraged to contact the researchers via the phone number or email addresses listed above.
What does the research involve?
The aim of this research project is to explore the experience for Australian families accessing or attempting to access early intervention for their young children with autism spectrum disorders and autism-like needs. Under investigation will be the range of children’s therapeutic needs, the range of early intervention strategies being investigated and accessed by families, and families’ experiences of gathering information and searching for suitable therapy or treatment for their child.
Participation involves responding to an anonymous online survey (link below). The survey is divided into three parts. The first part relates to your information such as age, gender, and relationship to the child for whom you are responding, as well minimal information about the child. The second part contains questions about the child’s therapeutic needs. The third part contains questions regarding your search for information about possible treatments and funding, and your experience of trying to access suitable treatment or therapy for your child. It is expected that completion of the survey will take between 15 and 30 minutes, depending on your responses.
Why were you chosen for this research?
Parents and caregivers of young children (up to age seven) with a diagnosis of an autism spectrum disorder, undergoing assessment for autism spectrum disorders, or with similar therapeutic needs are invited to participate in this study. Participants are being sought via online and print announcements with autism advisory groups and autism therapy providers. It is entirely up to parents and caregivers to decide whether they wish to view and participate in the anonymous online survey.
Consenting to participate in the project and withdrawing from the research
Participation in this research is entirely voluntary. Consent is implied via submission of the online survey, and may be withdrawn at any time prior to submission. Whilst completing the survey, you will be able to alter or remove your responses if you wish to, and can choose not to submit the survey at all. Once a survey has been submitted, it will not be possible to withdraw your responses, as all data is stored anonymously.
Possible benefits and risks to participants
Potential benefits for parents and caregivers include the opportunity to voice your perspective and advice based on your own experiences of assessing and accessing early intervention for your child. It is hoped that the results of this study may help shape policy and procedures around the early intervention system for children with autism and similar needs in Australia. A more effective health system and funding system and clearer dissemination of information may ensure more appropriate direction of government funding as children will be more likely to receive the specific therapeutic intervention that they need.
It is not anticipated that participants will experience inconvenience or discomfort, beyond the normal experiences of everyday life. We do not foresee any potential risks to parents or caregivers.
Confidentiality
No identifying information will be collected, and all participants’ responses will be entirely anonymous. Responses will be collated across all participants for analysis. Participants will be given the opportunity to select whether short quotes from their responses can be included in reports of the study results. If short quotes are included to illustrate a theme, demographic information will be strictly limited and quotes will be edited to reduce any possibility of identification of individuals.
Results of the study will be reported in a minor thesis by the student investigator, and will comprise the main assessment piece for completion of the Graduate Certificate in Educational Research. Results may also be published in academic journals and conference proceedings, and/or presented at local and international conferences.
Storage of data
Data collected will be stored in accordance with Monash University regulations, and kept in a locked filing cabinet for five years, accessible only by the researchers. After this time, all data will be securely deleted.
Results
If you would like a copy of any future published documents arising from this study, please contact the researchers on the contact details above.
Complaints
Should you have any concerns or complaints about the conduct of the project (Project Number CF14/3031 – 2014001680), you are welcome to contact the Executive Officer, Monash University Human Research Ethics:
Executive Officer
Monash University Human Research Ethics Committee (MUHREC)
Room 111, Building 3e
Research Office
Monash University VIC 3800
Tel: +61 3 9905 2052 Email: muhrec@monash.edu Fax: +61 3 9905 3831
Thank you for reading this information, and for considering participating in the study.
Thank you,
Dr John Ehrich, Dr Marc Pruyn & Ms Jacqueline Gately