Assessment of parental coping strategies and positive growth

 
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Information Statement

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.




Voluntary participation and informed consent
Your participation in this study is voluntary. When you have read the information about the study you will be asked if you would like to participate in the study or not. If you press no, no information about you will be retained. However, if you decide to press the submit button, we will take this as your informed consent to participate in this study. Once the questionnaire has been submitted (either when you complete the entire questionnaire or postpone the remaining 25% of questions), you are no longer able to withdraw the data that you have provided. However, at any time you can stop filling out the questionnaire. If you would like more information about the study before you decide to participate in the study, you can contact Jane Goodwin or Dr Linda Campbell by email or telephone as provided at the end of this information statement.

Emotional support
There may be items in this study that can upset some people. If you feel that you are at a higher risk of becoming psychologically or emotionally distressed by completing this study, we ask that you do not participate. If you would like to contact someone for support as a result of filling in this study, you can contact Lifeline 24 hour telephone counseling service on 13 11 14 (in Australia) at the cost of a local call. Additional charges may apply for calls from pay phones, mobiles or some home phone plans.

Benefits of completing study
There are no direct benefits from participating in the study. We hope that the results of the study will provide a better insight into parental coping and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.

Once you have completed the entire questionnaire, you have the opportunity to request an easy read summary of the results from the project, which will be provided at the conclusion of the study. In order to receive the summary you will need to provide your contact details at the end of the study or you can contact the research team.

Privacy
Your participation in this study is confidential. We will, however, ask demographic questions that may make you identifiable. Any information that may identify you will be stored securely on the researchers’ computers which are protected by the University IT Firewall. Identifying information will be kept for 10 years or until no longer required for reporting purposes and will then be destroyed. If you have any questions about the study, please contact Jane Goodwin or Dr Linda Campbell by email or telephone as provided at the end of this information statement.

How will the information collected be used?
The information collected will be reported in papers submitted for publication in a scientific journal, and also possibly at appropriate scientific conferences. They may also form part of a student's research thesis. Individual participants will not be identified in any reports that arise from the project.
Complaints
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 Office, The Chancellery, The University of Newcastle, University Drive, Callaghan NSW 2308, Australia, telephone (02) 49216333, email Human-Ethics@newcastle.edu.au.

Starting the study
Please read this Information Statement carefully to be sure you understand its contents before you consent to participate in the study. If there is anything you do not understand, or something you have questions about, please contact the researcher before starting the study. 
You will now be directed to an option on the next screen where you can agree or disagree to participate in the study.


Further Information
If you would like further information please contact

Jane Goodwin
Email:Jane.Goodwin@uon.edu.au
Phone: (02) 4349 4678

or

Dr Linda Campbell
Email: Linda.E.Campbell@newcastle.edu.au
Phone: (02) 43494490




Thank you for considering this invitation.

*
1. Now that you have read the Information Statement, do you wish to participate in the study?