Information Statement for teenagers/young adults and their parents participating in the Research Project:
 
 
The lived experience of young adults with 22q11.2 deletion syndrome (22q11DS) and their families.
 
 
The research project is conducted by Dr Linda Campbell and colleagues at the University of Newcastle in collaboration with the 22q Foundation Australia and New Zealand. The data may be used as part of an undergraduate or postgraduate student research project.
 
Why is the research being done?
This study is part of a larger program of research exploring risk and resilience for people with 22q11DS. The purpose of this particular study is to investigate the lived experience of young adults with 22q11DS as well as their families. Information gathered from this research will assist in supporting individuals and families living with 22q11DS. The current research aims to increase the knowledge surrounding with the lived experience of 22q11DS and identify areas that concern you. We hope through the current research to gain information regarding questions you would like answered in the future. This information will assist in determining the ways to best support individuals and families living with 22q11DS. Understanding what it is like to live with 22q11DS will help outline future research avenues that can address the concerns and questions you have.  
 
Who can participate in the research?
We are asking individuals with a diagnosis of 22q11.2 deletion syndrome (22q11DS), aged between 15 to 30 years, to participate in the study. We are also asking parents of young adults with 22q11DS to participate.

What choice do you have?
Participation in this research is entirely your choice, and 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 in any way. If you decide to participate, you may withdraw from the project at any time without giving any reason and have the option of withdrawing any of your data.
 
What would you be asked to do?
If you agree to participate in the study, you will be asked to:

• Read and sign an informed consent form
• Ask any questions you have related to the study
• Complete a brief online survey in which you are asked to provide some information about  yourself such as how old you are, how long you went to school, where you are currently living,  if you are working and so forth. If you are parent, you will be asked similar questions and also some brief questions about your child and the support you provide them with.
• Participate in an audio recorded focus group (a group discussion) where teenagers/young adults diagnosed with 22q11DS will be grouped with other individuals who have the same diagnosis, and parents of children with 22q11DS will be grouped with other parents who have a child with the same diagnosis. You will be asked about your lived experiences as a young person with 22q11DS or as a parent of a young person with 22q11DS. The discussion will take approximately 1 hour. The group discussions will be chaired by an independent moderator (student researcher) At the end of the discussion you will be asked be asked if you are happy you’re your contribution to the focus group discussion, and if you would like any of your comments removed from the audio recording. If you would like to add additional information after the focus group or remove additional information, you can do so by contacting Dr Linda Campbell.

 
 
What are the risks and benefits of participating?
It is possible that participants in the focus group may feel some increase in stress and anxiety as difficult times are recalled, particularly if your experience was particularly negative. Any feelings of distress will be supported, and participants can contact counselling services in the local area (University Psychology Clinic: 49215075; and Lifeline: 131114 telephone counselling service), if additional support is required. By being part of this research, you will have the opportunity to talk about your experiences of childhood or parenthood and tell your story. You will also contribute to a more accurate understanding of what it is like to have 22q11DS or to have a teen or young adult child with 22q11DS.
 
How will your privacy be protected?
A member of the research team, a research assistant or an UON authorized transcription service will transcribe the audio recording from the focus group. The transcript will not include any identifying information (e.g., all names will be replaced by a different name or code) and will then be analysed by members of the research team to identify themes. This means that you are not able to withdraw your data after the data has been transcribed. If you are concerned about any comments that you might have contributed, and wish to have those removed. Please, do so within one week after the conclusion of the focus group.
Any information that is obtained in connection with this study and that can be identified to you will remain confidential and will only be disclosed to non-investigators with your explicit permission. Importantly, your answers will be private and anonymous. You will be required to respect the confidentiality of the information disclosed during the focus group discussions. We will not share any identifiable information with your family or with the 22q Foundation Australia and New Zealand. Some of your answers may be included in the final report. If any of your comments are quoted, your name and any other identifying information will be changed. Anyone who reads the report will not be able to identify you or know what comments you made.
 
How will the information collected be used?
The information collected from this research will form a substantial component of a thesis to be submitted by a student researcher. In addition, research outcomes from this project may be published in scientific literature by the researchers and/or used for educational, future research and conference purposes. Individual participants will not be identified in any reports arising from the project.
 
You will be asked to indicate on the Consent Form if you would like to receive a summary of the results of the research. This brief summary will be mailed or emailed to you at the conclusion of the study. Participants will also be advised of the details of any journal publications arising from this research project.
 
What do you need to do to participate?
Please read this Information Statement and be sure you understand its contents before you consent to participate. If there is anything you do not understand, or you have questions, please contact us.
If you would like to participate, please complete the consent and registration form and we will be in touch with you soon.
 
Yours sincerely,
Dr Linda Campbell, BSc, MClinPsych, PhDClinical Psychologist and Senior Lecturer  
Co-investigators or Research Students: Dr Kathryn McCabe, Associate Professor Melanie Porter, Paige McGowen, Branagh Hender.     
                     
Complaints
This project has been approved by the University’s Human Research Ethics Committee, Approval No. H-2013-0405. Should you have concerns about your rights as a participant in this research, or if you have a complaint about the manner in which the research is conducted, you can either contact Dr Linda Campbell directly on email: Linda.E.Campbell@newcastle.edu.au, or contact an independent person at the Human Research Ethics Office, Research & Innovation Services, The University of Newcastle, University Drive, Callaghan NSW 2308, Australia by phone: (02) 4921 6333 or email: Human-Ethics@newcastle.edu.au.

After you have read the information statement on your left, you can contact us by completing the form below. We would like to know if you are interested in participating in the study, if so - let us know where you live (city and state) and how old your child is.

If you live in Sydney, we would like to know if you would like to attend the first scheduled focus group that will be held on the 9th of May, 2020.