Page 1: Participant information

You are invited to take part in a research project. Before you decide whether you would like to participate it is important that you read the information provided below. This will help you to understand why and how the research is being carried out and what participation will involve. If anything within this section is unclear or if you have any further questions, please contact the Principal Researcher. 

Who is conducting the research?

This research is being conducted as part of a master’s dissertation at the University of Dundee. The principal researcher is Mr. Lee Gordon (email: l.z.gordon@dundee.ac.uk). The project is being supervised by Prof. Nick Hopkins (email: n.p.hopkins@dundee.ac.uk; telephone: (0)1382 384625).

What is the purpose of the research?

The purpose of this research is to inform a master’s dissertation. It is interested in the relationship between communication and mental health for people with disabilities, and the role that social groups may play in this relationship.

Why have I been invited to take part?

You have been invited to take part as you meet the recruitment criteria of the study, specifically having a disability which can impair your ability to communicate with others. 

Do I have to take part?

No. Taking part in the study is completely voluntary and choosing not to participate will not disadvantage you in any way. You may decide to withdraw from the study at any time without explanation and without penalty. To do so simply stop filling in the questionnaire. If you have finished the questionnaire but wish to withdraw then you can do so by not submitting it to the researcher.

Please note that as this survey is anonymous, once you have submitted a completed survey you will not be able to withdraw your participation as we will not be able to personally identify your information to be able to withdraw it.  

What will happen if I take part?

You will be asked to complete a questionnaire which will take approximately 20-30 minutes. If you have a communication impairment that you would be happy to tell us about then we ask you to supply that information as part of the survey. The survey also asks for additional information including your age, gender, and relationship status, as well as more general questions such as how you have been feeling recently and questions relating to the social groups that you are a part of.

Are there any risks in taking part?

You will be asked some questions about how you have been feeling recently. While these questions are not designed to be upsetting, you are advised to stop participating immediately should you feel upset or distressed when answering them. If you feel upset, distressed, or worried, you can get help from the following organisations:

Samaritans    
Telephone (24 hours): 116 123 
E-mail: jo@samaritans.org

Breathing Space   
Telephone: 0800 83 85 87

NHS 24    
Telephone: 111        
Website: https://www.nhs24.scot/

What are the possible benefits of taking part?

While there are no direct benefits for individuals participating in the study, this study could lead to a better understanding about the topic of communication and mental health for people with disabilities. You will also be helping the lead researcher to gather data for their master’s dissertation.

To thank you for taking the time to participate in this study, you are offered to enter a prize draw for a chance to win a £20 amazon gift voucher. You can still enter this even if you withdraw from participating. You will need to provide an e-mail address to enter the prize draw. You can do this through the following link https://dundee.onlinesurveys.ac.uk/prize_draw.

Will my taking part in this project be kept confidential?

Your personal information collected through this study will be kept strictly confidential. The lead researcher and their academic supervisor will be the only individuals with access to this information. Your information will be anonymised in all outputs from this study to prevent you from being identified. All data will be kept and stored within the EU.

What will happen to the information I provide?

If you complete the digital version of the questionnaire, your information will initially be stored on Online Surveys (JISC). Once the data collection phase of the study is over, data will be exported and stored on a password protected hard-drive and backed up on Data files will be encrypted with a password to provide an extra layer of security.

If you complete a paper copy of the questionnaire, the researcher will digitise your data and store it in the same manner described in the previous paragraph. After the data from the paper copy has been digitised, the physical copy will be shredded.

Data will be stored for the duration of the study after which it will be destroyed (on December 1st 2019). If you decide to withdraw while taking part through the digital version of the study, any partially entered information will be deleted. If you decide to withdraw while filling out a paper copy and give the copy to the lead researcher, it will be shredded.

The findings of this study will be presented in the researcher’s dissertation. This is an academic document which will be made available to others. All results will be fully anonymised to prevent the identification of participants. Participants can access the published results by making a request to the lead researcher (contact details above).

Data Protection

The personal data that will be collected and processed in this study are age, gender, and relationship status data.

The special category (sensitive personal) data that will be collected and processed in this study is disability data.

The University asserts that it lawful for it to process your personal data in this project as the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

The University asserts that is lawful for it to process special categories of your personal data in this project as the processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) of the General Data Protection Regulation.

In accordance with article 89(1), ethical approval has been sought and gained for this study. The ethical approval process involved data management planning to identify and mitigate against risks to data security and ensure data minimisation.

The University of Dundee is the data controller for the personal and/or special categories of personal data processed in this project.

The University respects your rights and preferences in relation to your data and if you wish to update, access, erase, or limit the use of your information, please let us know by emailing (L.z.gordon@dundee.ac.uk). Please note that some of your rights may be limited where personal data is processed for research, but we are happy to discuss that with you. If you wish to complain about the use of your information please contact the University’s Data Protection Officer in the first instance (email: dataprotection@dundee.ac.uk). You may also wish to contact the Information Commissioner’s Office (https://ico.org.uk/).

You can find more information about the ways that personal data is used at the University at: https://www.dundee.ac.uk/information-governance/dataprotection/.

Is there someone else I can complain to?

If you wish to complain about the way the research has been conducted please contact the Convener of the University Research Ethics Committee (https://www.dundee.ac.uk/research/ethics/contacts/).

Alternative formats

If you would like to request a copy of this participant information sheet and consent form in an alternative format (e.g. large font or braille), please do so my contacting the lead researcher (L.z.gordon@dundee.ac.uk).