Title: Genetic disorders in children: An assessment of parental coping strategies and positive growth
Ethics Approval:This project has ethics approval from the University of Newcastle’s Human Research Ethics Committee. Approval No. H-2012-0129. Details about the ethics approval for this study can be found by contacting the researchers.
Chief Investigator: Dr Linda Campbell
Introduction to the study
You are invited to participate in this study as a parent or caregiver of a child diagnosed with a diagnosed neurogenetic disorder (such as 22q11.2 deletion syndrome, Velo-cardio-facial syndrome, DiGeorge syndrome/sequence, Fragile X, Down syndrome, Prader-Willi syndrome, Tuberous Sclerosis, etc.).
You are also invited to participate if your child has an as yet undiagnosed neurogenetic disorder (one or more anomalies that appear to be genetic in nature but an underlying cause or diagnosis has not been found).
This study is about how your child has impacted the lives of parents and caregivers. We are interested in how parents/caregivers have coped, and how the resources that are available to them have helped or hindered the experience. The aim of this study is to gain a broader understanding of issues facing parents and caregivers to children with both diagnosed and undiagnosed disorders. We hope that the results of the study may improve health care processes and models associated with these conditions.
The study is being conducted by Dr Linda Campbell, School of Psychology, at the University of Newcastle and is funded by the University of Newcastle. The research is part of Jane Goodwin's studies at the University of Newcastle, supervised by Dr Linda Campbell from the School of Psychology and Dr Tracy Dudding from the School of Medicine and Public Health.
How to complete the survey
The survey is large and will take approximately an hour to complete. There are no correct or wrong answers to any of the questions. If you do not wish to answer a particular question, it is okay not to answer and move on to the next question. Please take your time in thinking about each question before recording your response.
When you have completed approximately 75% of the survey you will be given the option to continue answering questions or to postpone the questionnaire at this point.
If you choose to postpone, your answers up until that point will be saved (and will not be able to be withdrawn) and you will be prompted to provide an email address. We will use your email address to send you a reminder and the URL to complete the survey. It is important to finish the remaining questions within 3 weeks of starting the questionnaire. To re-enter the survey, you will be required to provide your email address. Please note, the email address you provide will be treated with strictest confidence; remaining confidential within the research team. It will not be used for any other purpose. Once we have linked the two parts of your survey together, we will permanently delete your email from all records.