The attached statement below contains detailed information about this survey, Its purpose is to explain to you as openly and clearly as possible all the procedures involved in this project so that you can make a fully informed decision about whether or not you are going to participate. Please read the information prior to starting the survey. If you agree to take part in this survey after reading this information, we do not need you to fill in a written consent form. Your consent to participate is given by completion of the survey.

DEAKIN UNIVERSITY

To: Parents/Guardians and Children With Disability

PLAIN LANGUAGE STATEMENT

Date: 19 December 2017

Full Project Title:
Dance and children with disability: experiences of dance schools, dance teachers, parents and children

Principal Researcher: Prof. Nicole Rinehart

Study Information

1. Your Consent

You and your child are invited to take part in this research project. This statement contains detailed information about the research project. Its purpose is to explain to you as openly and clearly as possible all the procedures involved in this project so that you can make a fully informed decision about whether or not you are going to participate.

If you agree to take part in this study after reading this information, we do not need you to fill in a written consent form. Your consent to participate is given by completion of the survey. A copy of this statement has been attached at the bottom of this page.

2. Purpose and Background

This survey aims to find out what parents feel are the benefits, barriers and facilitators to participation in dance around Australia for children, and in particular, children with physical and developmental disabilities and challenges. The survey also aims to understand the dance experiences of children with disability.

If your child is aged 1-18 years old and is currently participating in a dance program or has in the past, you are invited to complete this survey. We want to hear from parents of children with a disability (eg. autism spectrum disorder, intellectual disability, cerebral palsy), and children who do not have a diagnosis but may be developmentally vulnerable and may need a little extra support and planning (eg. physical or behavioural challenges)

3. Funding

This survey is conducted by Deakin University. It is funded by the National Disability Insurance Scheme (NDIS) through the Information, Linkages and Capacity Building (ILC) National Readiness Grants program.

4. Procedure

If you are the parent or carer, participation will involve answering a survey exploring you and your children’s views of dance participation which will take around 20 minutes to complete and contains 68 questions. Your child will also answer a brief survey exploring their experiences of dance participation if you believe they are able to and wish to. The questionnaire will give you the option to provide personal information that may be deemed highly sensitive, such as information about your income, education level, and employment status. You will also be asked about your child’s disability. You are not obliged to answer any of these questions if you do not wish to. The child survey will take approximately 5 minutes to complete.

The survey will work on any smart phone or computer with access to the internet.

We are also conducting optional short telephone interviews with parents and children. Should you wish to participate, you may provide your name and contact details to the researchers at the end of the survey. The telephone interview will assist us to understand your unique experiences of dance with disability (eg. goals and aspirations) and provide an opportunity for you to comment on any areas not covered by the survey. With your permission, the interview will be digitally recorded so that we can make an accurate record of what you say. When the recording has been transcribed, you can be provided with a copy of the transcript, so that you can verify that the information is correct and/or request deletions. Parent telephone interviews take around 10 minutes to complete and child telephone interviews around 5 minutes to complete.

5. Possible Benefits

This project may not provide immediate or direct benefit to you or your family but may provide a better understanding of the factors relating to whether or not children participate in dance. This project is important because the data collected will assist in developing resources for parents, dance schools and teachers, and health professionals to identify 1) What key factors translate to participation in dance for children with disability, and 2) What may help to enable children with disability to participate in dance and contribute to the development of AllPlay Dance which will have the resources needed to make dance programs inclusive.

6. Possible Risks

If any of the questions make you feel uncomfortable or you become distressed and you wish to speak to someone about this, please call Dr Tamara May on 03 9244 5084

7. Privacy, Confidentiality and Disclosure of Information

No identifying information from results collected from the surveys and telephone interviews will be used in publications and conference presentations with only group level or de-identified responses included. If you choose not to provide these information, responses belonging to you and your child will remain completely anonymous and cannot be identified. Any information we collect from you that can identify you will remain confidential and will be electronically stored on password protected computers within the School of Psychology at Deakin University for a minimum of 5 years. If you agree to participate in future research related to this study your data may be stored for a longer period of time in accordance with the ethics attached to the future research study.

Only the research team will have access to this information.

8. Results of Project

On request, a summary of the study findings can be emailed to you at the completion of the study. Please email: apdance@deakin.edu.au to request this and provide your email address.

9. Participation is voluntary

Participation in any research project is voluntary. If you do not wish to take part, you do not have to. Participation in this study is independent of and separate from any involvement with Deakin University, NDIS or any clinical care received. If you decide to take part and later change your mind, you are free to withdraw from the project at any stage. If you provide identifiable information, all responses obtained from you and your child to date will not be used and will be destroyed. However, if you choose to remain anonymous, the researchers will not be able to determine which survey answers belong to you and your child so any information collected cannot be withdrawn from the study results. Your decision whether to take part or not to take part, or to take part and then withdraw, will not affect your relationship with Deakin University, NDIS or the researchers.

Begin the survey only after you have had a chance to ask your questions and have received satisfactory answers via the contacts provided at the end of this statement.

If you decide to withdraw your responses from this survey, please notify a member of the research team.

10. Ethical Guidelines

The study will be carried out in accordance with the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect the interests of people who agree to participate in human research studies.

The ethical aspects of this research project have been approved by the Human Research Ethics Committee of Deakin University. The research will be carried out in the School of Psychology, Deakin University, 221 Burwood Highway, Burwood, Victoria 3125.

11. Complaints

If you have any complaints about any aspect of the project, the way it is being conducted or any questions about your rights as a research participant, you may contact:

The Manager, Office of Research Integrity Deakin University, 221 Burwood Highway, Burwood Victoria 3125, Telephone: 03 9251 7129; Email: research-ethics@deakin.edu.au. Please quote project number [2017-299].

12. Further Information:

Contact:

Dr Tamara May
School of Psychology, Deakin University
221 Burwood Highway, Burwood, Victoria, 3125
E: tamara.may@deakin.edu.au
P: 03 9244 5084

Or

Professor Nicole Rinehart
School of Psychology, Deakin University
221 Burwood Highway, Burwood, Victoria, 3125
E: nicole.rinehart@deakin.edu.au
P: 03 9244 5469

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