COVID-19 Information Sheet

Survey Participant Information Sheet and Consent Form

Title
Understanding the impact of COVID-19 on people with disabilities

Investigators 
Kelsey Chapman, Elizabeth Kendall, Timothy Geraghty, Angel Dixon, Kevin Cocks, AM

Part 1: Participation Information

Introduction

You are invited to take part in this voluntary research project. A research team that includes researchers from Metro South Health, The Hopkins Centre, and Griffith University is conducting the research.

This Participant Information Sheet and Consent Form was developed to provide you with information about this project, including background on the research, what your participation means and what is involved in participating. Please read this information carefully and do not hesitate to contact the research team (details below) with any queries you may have.

Participation in this research is voluntary. If you do not wish to take part, you don’t have to.

If you decide to take part in this research project, you will need to tick the box on the first page of the survey that says “Yes I consent to participating in this research”. By ticking that box, you are confirming to the research team that you have understood what you have read, that you consent to take part in the research project, and that you consent to the use of your personal information as described below.

What is this research about?

This research is about understanding people’s perceptions of the impact of COVID-19 on health and daily life. People with disabilities are exposed to a greater risk than the general population to pandemic crises like COVID-19. Self-isolation and quarantine also seem to impact on people with disabilities and the members of their support network at a greater level than others. It is important to gather information about the experiences of people with disabilities and the members of their support network. This information will help governments, policymakers, and key stakeholders to understand the steps they need to take in order to protect people with disabilities and their support networks from future and current impacts of pandemic.

What does participation in this research involve?

You are being asked to volunteer to complete one online survey. This survey should take you approximately 15-20 minutes to complete. In order to participate, you must be over 18 years of age and be a person with disability or a member of a support network of a person with a disability (carer, family member, friend etc.)

The information collected from this survey may be utilized as part of a future study if you consent to this.

What are the possible benefits of taking part?

Participants will be entered into a draw to win $100 gift voucher. Your participation in this research will help the research team to understand the impact of COVID-19 and public health interventions, like self-isolation, on people with disabilities.

What are the possible risks and disadvantages of taking part?

The research team recognises that the survey discusses material that some participants may find sensitive or triggering. The research team aims to reduce the burden of this by ensuring you understand the research, consent to participate, and offers further follow up support if required. In order to further alleviate any risk to participants, the research team encourages you to complete the survey with a member of your support network on hand to provide any physical, emotional, or mental support that you may need. However, your support person cannot answer the questions on your behalf.

Should you find yourself becoming emotionally distressed, please contact your primary care provider or Beyond Blue (1300 22 4636) or Lifeline Australia (13 11 14). You may also wish to contact the research team directly (contact information below)

How will my confidentiality and privacy be protected?

All of the data that is collected in this survey will be de-identified and completely confidential. If during the survey your answer includes the use of names, dates, or places that may make you or other people identifiable, these elements will be removed from your response by the Chief Investigator prior to analysis. If you voluntarily provide your contact details at the end of the survey, the Chief Investigator will separate this data and replace it with a numerical identifier.

This information will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. Your anonymity will be safeguarded at all times. All data will be stored securely on an encrypted and password protected storage drive that will be accessible only by the members of the research team. This data will be stored securely for seven years.

Publication and Outcomes

Results from this research may be disseminated vial journal articles and/ or in conference presentations. A summary of findings may also be provided to participating organisations. All summaries of findings, publications and presentations will be abstracted to protect the privacy and confidentiality of all participants.

If participants would like to access a plain language summary of the research results, please contact k.chapman@griffith.edu.au. The researchers will send you the summary at the culmination of the study.

Who has approved this research project?

This project will be carried out according to the National Statement on Ethical Conduct in Research Involving Humans (2018). This statement was developed to protect the interests of participants. All research in Australia is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this research project have been approved by the HREC at Griffith University (GU Ref No: 2020/425)

Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the ethical conduct of this research project, you are encouraged to contact the Manager, Research Ethics on 07 3735 4375 or research-ethics@griffith.edu.au

Further information and who to contact

The person you may need to contact will depend on the nature of your query.  If you want any further information concerning this project or if you have any problems that may be related to your involvement in the project, you can contact the researcher or any of the following people:

Research contact person

Kelsey Chapman
Co-ordinating Principal Investigator
0424 868 998
k.chapman@griffith.edu.au

 Local HREC Office and Complaints Convenor contact

HREC Coordinator
Research-ethics@griffith.edu.au
 

Part 2: Consent

Declaration by Participant

If you proceed with participating in this research, then you will be agreeing that you:

·       Have read the Participant Information Sheet or someone has read it to you in a language that you understand.

·       Understand the purposes, procedures and risks of the research described in the project.

·       Have had an opportunity to ask questions and are am satisfied with the answers you have received.

·       Freely agree to participate in this research project as described and understand that you are able to stop completing this survey at anytime.

·       Agree to allow your de-identified data collected as part of this study to be utilized in a future study.

·       Understand that any future study that uses the de-identified data collected as part of this study will also be required to have ethics approval.

Furthermore, by providing us with your personal information (including medical and health information) you consent to that personal information being stored and used by us in the manner and for the purposes identified in our Privacy Plan which is available at https://www.griffith.edu.au/about-griffith/corporate-governance/plans-publications/griffith-university-privacy-plan. You also acknowledge that and consent to your personal information (including medical and health information) being processed both in the country in which it was collected and in other countries where laws regarding processing of personal information may be less stringent than those of Australia (or your country of residence, if you are not in Australia). In particular, the service is facilitated by Microsoft Products which may record the instance of service and store that recording and other associated data outside Australia in a jurisdiction which we are unable to specifically identify (but which may be the USA, Singapore, Hong Kong or elsewhere in South East Asia).

Please note that your official consent will be recorded by ticking the “Yes I consent to participating in this research” box on the online survey interface. Your consent will be digitally stored for the duration of the project.