Current Projects > Autistic Spectrum Disorders (ASDs)
Family Needs around the Diagnosis of ASDs
This member-proposed project is collecting information from 1500 Australian families about their experiences of their child’s recent ASD diagnosis: from the timing of diagnosis, to the information they received, and the therapeutic services they access now. This will be the first large-scale survey of ASD service delivery in Australia and how the experience of Australian families might be improved during this difficult time. It will be complemented by a survey of the practices and experiences of APRN paediatricians. Ultimately, we hope this information will inform guidelines to improve this experience for Australian families and their paediatricians.
Investigators: Drs Sabine Hennel (Monash Medical Centre, Vic), Christos Symeonides (Murdoch Childrens Research Institute, Vic), Cathy Coates (Latrobe Regional Hospital, Vic), Harriet Hiscock (Royal Children’s Hospital, Vic)
Start date: October 2011
End date: July 2012
Funding bodies: Scobie and Claire Mackinnon Trust, Southern Health
Ethics approval: Royal Children’s Hospital (#31175A) and Southern Health (#10318B), both Vic
What we are asking APRN members to do:
- Identify children, aged 18 months to 18 years from their clinic records who have received any ASD diagnosis since January 1st 2010.
- Mail these families a pre-prepared letter that describes the study and gives families the opportunity to opt-out/opt-in* of hearing more (see example of opt-out letter attached).
- Display an APRN poster in their clinic to let families know that they may be approached about taking part in APRN research (see attached).
What we are asking families to do:
- Complete a 10-page parent questionnaire (approx 30 minutes) and post it back to the study team in a reply-paid envelope.
What the study team will do:
- Supply all pre-prepared letters (stuffed, sealed and stamped) for the mail out.
- Contact families who do not opt-out/opt-in* within 2-4 weeks of receiving the letter and invite them to participate. Families can choose not to participate, and families who enroll in the study are free to withdraw at any time.
Contact: If you would like more information, please email us at autism.survey@rch.org.au. We look forward to hearing from you.
* Families are not asked to commit to participating to the project at this point. APRN members working at Southern Health who see public patients use an opt-in procedure (Southern Health Ethics approval). All other APRN members use the opt-out procedure (Royal Children’s Hospital Ethics approval).