Washington DC Research Information Sheet

Logistical Information

This research will take place on January 15, 2024 at the Smithsonian American Art Museum and National Portrait Gallery (SAAM/NPG). We will meet at 12:00pm and will be finished by 3:00pm.

Research Project Title 

Crafting Deaf-Friendly Museums and Programming 

Invitation Paragraph 

You are being invited to take part in a research project. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read this Participant Information Sheet carefully. 

The data collected as part of this study may be used, in part or in whole, for the writing of a PhD dissertation. At no time will any personally identifiable data be published without consent. 

What is the purpose of the research project? 

This project asks what it means for a museum to be “deaf-friendly,” and how museums can create a sense of welcome and belonging as well as an equality of experience for deaf and hard of hearing visitors. The data collection will take place in 2023 and 2024, and the project will be completed by 2027. The project will include interviews with deaf museum visitors to discuss their experiences in museums, and discussions with museum staff who have worked to make their museums more accessible to people with disabilities. 

Why have I been invited to participate? 

You have been asked to participate in this research because you have expressed interest in museums, history, or other aspects of the project, and because you have identified yourself as being deaf or hard of hearing. 

Do I have to take part? 

It is up to you to decide whether or not to take part in this research project. If you do decide to take part you will be given this information sheet along with a privacy notice that will explain how your data will be collected and used, and be asked to provide your consent to participate. If you decide to take part you are still free to withdraw at any time and without giving a reason, by contacting the researcher. 

What will happen to me if I take part? 

In a group of approximately six people, including other deaf and hard of hearing participants and the deaf researcher, you will visit one or more museum exhibitions. During this visit, you will have the opportunity to chat with other members of the group and interact with the museum exhibit and staff. This will take approximately one hour of your time, but it may take longer if the group decides together to extend the visit. The visit will last no longer than two hours. 

After the visit, the group will move to a meeting place in or near the museum. The researcher will ask questions about your experience in the museum exhibit, and your feelings about museums in general. You will have the opportunity to share any thoughts you wish. This meeting will be video recorded, and the researcher may also take notes. This meeting will take approximately one hour, but it may extend up to 90 minutes. The language for both the visit and the discussion will be American Sign Language.

The location for this research is the Smithsonian American Art Museum/National Portrait Gallery at Gallery Place. You are responsible for getting to and from the museum on your own. If you are not able to get to the museum, you can cancel your participation in the research with no negative consequences. Admission to the museum and parking will be free. 

At the end of the group meeting, you will receive $10 in cash as compensation for your time and contributions.

What are the possible disadvantages and risks of taking part? 

The risks associated with this research are minimal. However, participation will take several hours of your time, and you may incur costs for your transportation. 

What are the possible benefits of taking part? 

Taking part in this research study could potentially benefit yourself and others by adding to the body of research museums use to plan and develop their exhibitions and programming. 

What data will you collect about me? 

The only personal data collected will be your chosen self-identification of hearing status (such as deaf, hard of hearing, Deaf, Deafblind, etc) and the languages you communicate in (which signed, spoken, or written language). Although your physical characteristics, including apparent race and gender, will be recorded on the video of our interviews, this data is not part of the study and will not be specifically collected. 

Will what I say in this research project be kept confidential? 

Everything you say in this research project will have your name removed. In general, comments will be taken together, but the researcher will use quotes you make with a separate identifier, such as “Participant 1,” without including any personal information about you. 
 
Because this research is being conducted in sign language, all discussions will be video recorded. These recordings will be labeled by location, and your personal information will not be recorded alongside the video itself, unless you share this information during the discussion. The recordings will be used by a professional translation service to produce an English transcript of all sign language conversation. The translators may be able to recognize you from these videos, but they will not record your personal information. You will be assigned a code name within the English transcript, which will not be connected to your personal information in any way. Once the translation of your recording is complete, the video will be stored until the project is complete, but will not be accessed further by anyone except the Principal Investigator, and only if necessary for clarification of the transcript. After the completion of this research project, the videos will be permanently deleted. 

How will you look after the data you collect about me? 

We need to ensure that you understand what will happen to data we collect about you as well as your legal rights. This document is accompanied with a separate Privacy Notice providing further details, you can access this via https://le.ac.uk/policies/privacy

Your normal rights under the Data Protection Act and the General Data Protection Regulation apply. You can stop being part of the research project at any time, without giving a reason. All specific quotes provided by you and identified with your code name will be removed from the data. Feedback you provided that contributed to aggregate data cannot be removed as it is not broken out by individual. 

At all times this research study will comply with the UK General Data Protection Regulations (2018). 

What will happen to the results of the research project? 

The results of this research will be used for a doctoral dissertation. You may ask to receive a copy of this dissertation, which should be completed within five years after your participation. If you wish to receive a copy, your name and email address will be added to a spreadsheet for this purpose, but this data will not be attached to anything you say during the research. 

It is possible this dissertation will lead to future research and publications on the same topic. 

What should I do if I want to take part? 

If you decide to participate, you will be asked to complete an Informed Consent Form and to opt-in to a variety of research options by ticking the Yes or No box. This will confirm you understand how your data will be processed, protected and reviewed for research purposes. 

Who is organising and funding the research project? 

This research is being conducted by a doctoral (post-graduate) student in the University of Leicester’s School of Museum Studies, which is part of the University’s College of Social Sciences, Arts, and Humanities. The fieldwork you are participating in has been partially funded by a bursary from Event Communications, which is based in London. 

What if something goes wrong? 

In the very unlikely event of you being harmed by taking part in this research project, there are no special compensation arrangements.  If you are harmed due to someone’s negligence, then you may have grounds for legal action but you may have to pay for it. 

Who has reviewed the research project? 

This research project has been approved by the University of Leicester Research Ethics Committee. 

Contact for Further Information 

You can contact the researcher, Meredith Peruzzi, at mp661@leicester.ac.uk. You may also contact the research supervisor, Suzanne MacLeod, at sm100@leicester.ac.uk.  

If you have any concerns or queries about the way in which the research project has been conducted, please contact the Chair of the University Research Ethics Committee at ethics@le.ac.uk

If you require more GDPR data protection information please contact the University’s Information Assurance Services:  

Information Assurance Services 
University of Leicester 
University Road 
Leicester 
LE1 7RH 
T: +44 (0)116 229 7945 
E: dpo@le.ac 

W: https://www2.le.ac.uk/offices/ias 

Closing 

Thank you for taking the time to read this participant information sheet. Your contribution to this research is valued and appreciated.