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Accessing care and antibiotics in the US — Information for participants

Audio version

You can listen to Dr Ulla McKnight reading the 7 April 2020 version of this information:

If you have any questions you can ask us on +4407867138015 Email: u.mcknight@sussex.ac.uk.

If you are happy, you can .

Written version

This version of the participant information sheet is dated 7 April 2020.

You are being invited to take part in a research study. 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 the following information carefully. This project is part of a larger Wellcome Trust funded research programme on mobilisation against antimicrobial resistance which includes studies of changing clinical practice, patient experiences and the evolution of both scientific understanding and policy.

This study aims to better understand how people that are from groups and communities that already had a hard time accessing health care go about gaining access to sexual health care and antibiotics in the middle of a pandemic. We would like to interview people that live in the United Kingdom and the United States to explore their feelings and experiences with medical care, antibiotics and sexually transmitted infections (STIs). The study will end in September 2022.

Why have I been invited to participate?

You have been asked to participate in this study because you are 18 or older and you live in the UK or the USA. We will ask about 50 people to be interviewed. Some of those people will be asked to be interviewed a few more times. All of the people that participate in the research will have had experiences with medical care and antibiotics.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you will be given this information sheet to keep and be asked to print out and sign a consent form and email it back to the researcher. Or the researcher can record you giving consent verbally. If you decide to take part you are still free to withdraw at any time up to two months after you have taken part, without giving a reason. We will respect your decision immediately and remove any data not yet included in publications that arose from interviews with you.

What will happen to me if I do take part?

The researchers would like to conduct the interview over the phone using a free service of your choosing like Skype. The interview would last for about an hour. We would like to record interviews to get an accurate record of what is said. We will ask for your permission before we do this and would destroy the recordings once they have been transcribed. Transcripts of the interviews will be kept confidential and stored only in an anonymous form.

After the interview the researcher might ask if you would be willing to be interviewed again at a later date. You can take time to decide and email or text the researcher if you’d like her to contact you again. Publications may include quotations from the interviews but your real name will never be used in any of the publications.

What are the possible disadvantages of taking part?

It is possible that talking about issues relating to infections and sexual health care could be upsetting and could cause some embarrassment or raise questions. You do not need to answer any questions you would prefer not to. The researcher will give you information about support groups if you wish.

Each interview is expected to last for about one hour. Therefore another possible disadvantage is the amount to time it will take to participate. If you agree to be interviewed, you will be compensated for your time with 20 pounds or 20 dollars per interview.

What are the possible benefits of taking part?

You may appreciate talking to an outsider about your experiences. However, the study cannot promise to help you and there are no intended clinical benefits to the study at this time. Instead, the possible benefits of taking part in the research are that it may increase our understanding of how people access sexual health care and antibiotics in difficult circumstances. This information can be used to help sexual health clinics, clinicians and policy makers improve access to sexual health care, reduce the use of antibiotics and fight infections without increasing health inequalities.

Will my information in this study be kept confidential?

All of the data we collect (consent forms or recordings of you giving consent and recorded interviews) will be kept strictly confidential and secure and in compliance with the General Data Protection Regulation (GDPR) guidance (see information at https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/).

Dr Ulla McKnight and Dr Catherine Will will uphold the core principles of and comply with all applicable regulations and the principles from the UK Policy Framework for Health and Social Care Research (2017), the General Data Protection Regulation (GDPR) and the Data Protection Act (2018). All confidential data, and typed up transcripts collected for this project will be kept for 10 years on a password protected computer in compliance with the Data Protection Act as well as the University of Sussex guidelines for the safe storage of confidential data. The data will only be accessible to Dr Will and Dr McKnight. The data will be destroyed after 10 years. Audio recordings of interviews will be destroyed after transcription. The transcriber will sign a confidentiality agreement. No one will be able to identify you in any of the material we publish.

What should I do if I want to take part?

If you would like to take part in the study – Dr Ulla McKnight will ask you to fill out the consent form and send it to her via email. Or she can read the consent form to you and record you giving consent to take part.

What will happen to the results of the study?

The information collected for this study will be used to write academic pieces including conference papers and articles, as well as reports and training material for clinical staff and policy makers. All of these will be made available on the project’s website where you can sign up for direct updates and news of events. We will also post information about the project on Facebook, Instagram and Twitter addresses.

Who is organising and funding the research?

Dr Ulla McKnight in the School of Law, Politics and Sociology at the University of Sussex in the UK is organising the research. The research is funded by an Investigator Award from The Wellcome Trust granted to Dr Catherine Will in the same school.

Who has approved the research?

The research has been approved by the Social Sciences & Arts Cross-Schools Research Ethics Committee (C-REC) at the University of Sussex in the UK. The ethical review application number of the study is ER/UM38/3.

Contact for further information

If you would like further information please contact Dr Ulla McKnight or Dr Catherine Will using the details provided below.

Dr Ulla McKnight, Freeman Building, School of Law, Politics and Sociology University of Sussex Brighton BN1 9QE, UK. Tel: +4407867138015 Email: u.mcknight@sussex.ac.uk.

Dr Catherine Will, Freeman Building,School of Law, Politics and Sociology University of Sussex, Brighton BN1 9QE, UK. Email: c.will@sussex.ac.uk.

If you have any concerns about the way in which the study has been conducted, you can contact the Chair of the C-REC at c-recss@sussex.ac.uk.

Insurance

The University of Sussex has insurance in place to cover its legal liabilities in respect of this study.

Thank you for reading this information sheet. Please keep a copy for your records.

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