2019 Consent form

Download the consent form here or read the version below.

What is the research study about?

You are invited to take part in this research study. The research study aims to explore how photography can be used as a tool to better understand the experience of disability, especially for women with disability, to address negative attitudes that lead to discrimination, stigma and exclusion. You have been invited because you expressed interest via our website and your contact details were obtained from your application.

Who is conducting this research?

The study is being carried out by the following researchers: Prof Katherine Boydell (Black Dog Institute), Dr Angela Dew (UNSW School of Social Sciences) and student investigator, Diane Macdonald (PhD candidate in the UNSW School of Psychiatry).

Inclusion/Exclusion Criteria

Before you decide to participate in this research study, we need to ensure that it is okay for you to take part. The research study will recruit people who meet the following criteria:

Inclusion criteria

Identify as a woman (18+) with a lifelong physical and/or sensory disability (not acquired)

Included: Physical impairment (e.g., cerebral palsy, cystic fibrosis, spina bifida) and/or Sensory impairment (e.g., blindness and low vision, hearing loss and deafness)

Excluded: Intellectual and cognitive impairment (e.g., intellectual disability, Autism, Down syndrome, Fragile X syndrome, Foetal Alcohol Spectrum Disorder)

Strong interest in photography and the arts

Consent and desire to be publicly identified as artist and author of the works. The participant must be aware and want their photographs to be recognised in public as their work, and that she will be identifiable and given credit as the artist behind the work

Be able to take photographs with a digital SLR or work closely and instruct a support person to do so on your behalf – the work must remain as your own

Agree to complete the four assignments which means emailing 5-10 photographs to Diane every two weeks at least two days before next session

Agree to select and email ten final high-resolution photographs to Diane in week 10

Agree to supply a short biography and written words to accompany each photograph

Consent to being photographed during the process, including a good quality portrait (by Diane). Visual documentation serves not only as a record of the working process but may also be used in promotional materials on the project.

Consent to being video-interviewed during the process

Agree to a group consensus of selecting 20-30 photographs for exhibition (2-3 each)Desirable. The previous ten criteria are essential to the research process and are contained within the three-month fieldwork period. Desirable inclusion criteria, below, are over and beyond the limits of the research project but would be beneficial to the project and could be beneficial to the participant.

Attend opening night of exhibition

Express interest in speaking in any seminar

Express interest in co-authoring an academic paper

The first ten women who meet the inclusion criteria will be accepted into the program, selected by their registration responses and ability to commit and attend. If registrations exceed 10 applicants, two participants will be placed on a waiting list and any additional respondents will be informed via email that unfortunately they have not been selected to take part in this research project.

Do I have to take part in this research study?

Participation in this research study is voluntary. If you do not want to take part, you do not have to. If you decide to take part and later change your mind, you are free to withdraw from the study at any stage.

If you decide you want to take part in the research study, you will be asked to:

Read the information carefully (ask questions if necessary);

Sign and return the consent form if you decide to participate in the study;

Take a copy of this form with you to keep.

What does participation in this research require, and are there any risks involved?

Completion of a photographic series

If you decide to take part in the research study, we will ask you to take a series of photographs on your identity. You will be asked to photograph yourself, places or objects that represent your unique personal, family, work or social identity. The project guidelines document offers examples of how some well-known feminist photographers represent identity and can be used as a starting point. You will be guided in the process which will require that you attend five meetings at the Black Dog Institute in Randwick Hospital Road, Prince of Wales Hospital, Randwick NSW 2031, Australia. These meetings will be held on:

Saturday, 16 March 2019: 10am to 1pm
Saturday, 30 March 2019: 10am to 12pm
Saturday, 13 April 2019: 10am to 12pm
Saturday, 4 May 2019: 10am to 12pm
Saturday, 18 May 2019: 10am to 1pm

The study should take approximately three months to complete. It is expected that participants will spend two to three hours on this research study each week: either at the bi-weekly meeting or taking photographs. These photographs, together with your descriptions of your photographs, will be used to create a photographic exhibition, a booklet and academic research articles.

Participation in a video interview

If you decide to take part in the research study, you will be asked to participate in two video interviews. You will be asked questions about photography, disability and how you view your identity. Each interview should take approximately 10 minutes to complete and will be done at your choice of location.

To ensure we collect the responses accurately, we seek your permission to digitally record the interview using a smart phone. If you would like to participate but do not wish to be recorded, you will need to discuss the options for your participation with the research team.

If you decide to take part in the research study, the research team will ask you to take 20 to 40 photographs over the course of five meetings and participate in group discussions at each meeting. It should take approximately three months to complete the task. A researcher will help you with any technical issues or problems.

You will be asked to sign three consent forms, but will be under no pressure to sign any or all of them:

Photograph consent form

Video release form

Booklet release form

There is no financial reimbursement or payment for this research.

If you experience discomfort or feelings of distress while participating in the research and you require support, you can stop participating at any time. You can also tell a member of the research team and they will provide you with assistance or alternatively a list of support services and their contact details are provided below. These contacts include the team at Black Dog Institute, the UNSW Human Research Ethics Committee, Beyond Blue and Lifeline.

What are the possible benefits to participation?

We hope to use information we get from this research study to benefit others who have disability and feel excluded and change perceptions of disability by those without disability. Evidence based on similar projects using these methods show that participants find it a pleasurable experience to visually depict their story as it increases self-esteem, confidence and empowers.

What will happen to information about me?

By signing the consent form you consent to the research team collecting and using information about you for the research study. Your data will be kept for a period of 5 years after the project’s completion. We will store information about you in identifiable JPEG, MP4 and DOCX formats on UNSW OneDrive

Your information will only be used for this project.

The information you provide is personal information for the purposes of the Privacy and Personal Information Protection Act 1998 (NSW). You have the right of access to personal information held about you by the University, the right to request correction and amendment of it, and the right to make a complaint about a breach of the Information Protection Principles as contained in the PPIP Act. Further information on how the University protects personal information is available in the UNSW Privacy Management Plan.

How and when will I find out what the results of the research study are?

The research team intend to publish and/ report the results of the research study in a variety of ways.

If you would like to receive a copy of the results you can let the research team know by including your details in the space provided in the consent form.

What if I want to withdraw from the research study?

If you do consent to participate, you may withdraw at any time. You can do so by completing the ‘Withdrawal of Consent Form’ which is provided at the end of this document. Alternatively, you can ring the research team and tell them you no longer want to participate. Your decision not to participate or to withdraw from the study will not affect your relationship with Black Dog Institute or UNSW Sydney.

If you decide to leave the research study, the researchers will not collect additional information from you. Any identifiable information about you will be withdrawn from the research project.

What should I do if I have further questions about my involvement in the research study?

The person you may need to contact will depend on the nature of your query. If you require further information regarding this study or if you have any problems which may be related to your involvement in the study, you can contact the following member/s of the research team:

Research Team Contact Details

Prof Katherine Boydell

Director of Research, Black Dog Institute

+61 2 9382 4530

Support Services Contact Details

If at any stage during the study you become distressed or require additional support from someone not involved in the research please call:

Black Dog Inst Clinic

1300 22 4636

What if I have a complaint or any concerns about the research study?

If you have a complaint regarding any aspect of the study or the way it is being conducted, please contact the UNSW Human Ethics Coordinator:

Complaints Contact

UNSW Human Research Ethics Coordinator

+ 61 2 9385 6222

HC 180845

Consent Form – Participant providing own consent

Declaration by the participant

I understand I am being asked to provide consent to participate in this research study;

I have read the Participant Information Sheet, or someone has read it to me in a language that I understand;

I understand the purposes, study tasks and risks of the research described in the study;

I understand that the research team will video record the interviews; I agree to be recorded for this purpose.

I provide my consent for the information collected about me to be used for the purpose of this research study only.

I have had an opportunity to ask questions and I am satisfied with the answers I have received;

I freely agree to participate in this research study as described and understand that I am free to withdraw at any time during the study and withdrawal will not affect my relationship with any of the named organisations and/or research team members;

I would like to receive a copy of the study results via email or post, I have provided my details below and ask that they be used for this purpose only;

I agree to supply my photographs and accompanying descriptions for publication on a website, in scholarly articles and in an exhibition;

I agree that my data can be stored and re-used for the exhibition and subsequent academic publications that arise at the end of the first phase of the research study - the collection of photographs;

I agree that my two video interviews can be used for scholarly presentations and writings;

I understand that I will be identifiable as the artist in any publication and for the researchers to use my identifiable information and photographs in publications and presentations.

Name: _____________________________________

Address: ___________________________________

Email Address: ______________________________

I understand that I will be given a signed copy of this document to keep;

Participant Signature

Name of Participant (please print)

Signature of Research Participant

Date

Declaration by Researcher*

I have given a verbal explanation of the research study; its study activities and risks and I believe that the participant has understood that explanation.

Researcher Signature*

Name of Researcher (please print)

Signature of Researcher

Date

+An appropriately qualified member of the research team must provide the explanation of, and information concerning the research study.

Note: All parties signing the consent section must date their own signature.

Form for Withdrawal of Participation

I wish to WITHDRAW my consent to participate in this research study described above and understand that such withdrawal WILL NOT affect my relationship with The University of New South Wales. In withdrawing my consent, I would like any information which I have provided for the purpose of this research study withdrawn.

Participant Signature

Name of Participant

(please print)

Signature of Research Participant

Date

The section for Withdrawal of Participation should be forwarded to:

CI Name: Prof Katherine Boydell

Email: k.boydell@blackdog.org

Phone: +61 2 9382 4530

Postal Address:

Hospital Road, Prince of Wales Hospital, Randwick NSW 2031, Australia

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