EXPLANATORY STATEMENT - PARENTS
Project ID: 21710
Project title: Internalising problems in adolescents: Prevalence, presentation and coping strategies used
Chief Investigator:
Dr Nerelie Freeman
Department of Education - Psychology
Phone: +61 3 9905 4391
email: nerelie.freeman@monash.edu
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 address listed above.
What does the research involve?
Young people with autism are at higher risk of developing anxiety and depression. It has been suggested that this is because they are more likely to have negative experiences related to social situations. Some adolescents with autism may also be aware that they are different to other young people but feel their situation is unlikely to change. Limited research has examined how young people with autism cope when they have mental health concerns or have experienced negative life events. The aim of this study is to examine differences in prevalence, presentation and coping strategies of internalising problems (anxiety and/or depression) in autistic adolescents compared with typically developing adolescents. It also aims to compare the reports of mental health issues reported by autistic adolescents, and whether they are similar to reports made by their parent and/or teacher.
This survey contains a series of short questionnaires which will ask about your child’s autism symptoms over their lifetime and about their mental health (depression symptoms). These questionnaires will take approximately 10 minutes to complete. Once these have been completed, you will be provided a website survey link for your child to complete a series of short questionnaires which will ask about their mental health (anxiety and depression symptoms), the coping strategies they use in everyday life, and the positive and negative life events they have experienced over the past year. These questionnaires will take approximately 20 minutes to complete. If you consent, your child’s teacher will also be provided with a website survey link to complete short questionnaires about your child’s mental health (depression symptoms). These questionnaires will take approximately 5 minutes to complete.
Why were you chosen for this research?
This explanatory statement has been given to you because you have either contacted the research team and indicated that you are interested in being part of this study, or you have participated in a research project in the past and consented to be contacted about future research projects.
Your child will be eligible to participate in this study if:
they have a diagnosis of autism
AND
they do not have a co-occurring intellectual disability
Consenting to participate in the project and withdrawing from the research
If you agree to be part of this project, please indicate your consent in the question following this explanatory statement.
Being in this study is voluntary and you are under no obligation to consent to participation. However, if you do consent to participate, you may only withdraw within 8 weeks of completing the questionnaires. Whether you take part or not, it will not make any difference to any funding or services which your child or your family may currently receive. It will also have no adverse impact on the schooling your child currently receives.
Possible benefits and risks to participants
Examining internalising problems (anxiety and/or depression) in adolescents with autism may better inform interventions to promote their social-emotional functioning.
Although not expected, there is the possibility that participants may experience distress when completing the questionnaires since items on the Child and Adolescent Survey of Experiences (CASE) asks participants to consider recent life experiences, some of which may be negative e.g., Someone in my family left home; I had a big argument with someone special to me. Your child can choose to discontinue completing the survey if it causes distress, and may either complete it at a later time or simply withdraw from the study.
Services on offer if adversely affected
Should participants experience any distress during the study, they can contact one of the services provided at the bottom of this statement.
Payment
Participants will go into a draw to win a $20 gift voucher for their participation in the study. Participants who do not complete the rating scales or withdraw from the research will still be eligible to win these vouchers.
Confidentiality
No participant will be identified by name or identifying characteristics in any publication or presentation. Your Internet Protocol (IP) address will be collected in the data set, but IP addresses do not uniquely identify a person. The collection of IP addresses can help monitor whether an individual has provided multiple submissions to the survey within a short period of time (e.g., within the same hour), and ensures that each submission relates to an individual, rather than multiple submissions from the same individual.
Data on computers is securely stored and de-identified (names are not used). Data will only be available to members of the research team. On completion of the study, the data will be disseminated in Master’s theses and potentially published in an academic journal article or used in a conference presentation.
Storage of data
All questionnaire data collected using Qualtrics are stored in a single, secure data centre. No data collected by Qualtrics are stored in cloud-based facilities. For more information, please view Qualtrics’ privacy statement (www.qualtrics.com/privacy-statement). Electronic copies of questionnaires will be downloaded to computers belonging to the researchers with two step password protection.
All hard copies of data will be stored in a locked filing cabinet in the Chief Investigator’s office at Monash University. On completion of the study all electronic data will be kept securely stored on Nerelie Freeman’s password protected Monash University computer. The data will be retained for 5 years from the most recent publication of the research.
Use of data for other purposes
The data collected in this study may be used in future research projects relating to coping and mental health issues in adolescence. However only aggregate, de-identified data will be used for these projects where ethics approval has been granted. There will be no information that could identify individual children or families. This data will only be used in future research projects if you give your consent for this to happen.
Results
If you would like to be informed of the aggregate research findings, please contact Dr Nerelie Freeman (see details above). A summary will be made available to participants at the conclusion of the study (December 2022).
Complaints
Should you have any concerns or complaints about the conduct of the project, you are welcome to contact the Executive Officer, Monash University Human Research Ethics Committee (MUHREC):
Executive Officer
Monash University Human Research Ethics Committee (MUHREC)
Room 111, Chancellery Building D,
26 Sports Walk, Clayton Campus
Research Office
Monash University VIC 3800
Tel: +61 3 9905 2052 Email: muhrec@monash.edu Fax: +61 3 9905 3831
Thank you,
Dr Nerelie Freeman
If you or your child become distressed during completion of the questionnaires, please contact:
Kids Helpline
Phone: 1800 55 1800
Web counselling: kidshelpline.com.au/get-help/webchat-counselling
Email counselling: counsellor@kidshelpline.com.au
Headspace
Phone: 1800 650 890
Chat online or email a clinician: headspace.org.au/eheadspace/connect-with-a-clinician/
Beyond Blue Lifeline
Phone: 1300 22 4636 Phone: 13 11 14