Information for Participants
Co-creating a ‘peer researchers toolkit’ for LGBTQ+ unpaid carers
You are being invited to take part in a Knowledge Exchange project. Before you decide whether or not to participate, it is important for you to understand why the project is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part. Thank you for reading this.
What is the project’s purpose?
Useful social care research needs to be informed by the very social groups it wishes to benefit (beneficiaries). Therefore, providing a set of tools and resources to engage with said beneficiaries and involve them from the ideation phase all the way to execution, is of paramount importance. For this project, we wish to produce together with LGBTQ+ unpaid carers a toolkit for Patient and Public Involvement (PPI) that will inform future researchers regarding how they can engage LGBTQ+ unpaid carers in their social care research projects. The toolkit will contain information and guidance as to how LGBTQ+ unpaid carers can be involved as peer-researchers, and specifically guidelines regarding the training, supervision and support of LGBTQ+ unpaid carers, including best practices and frequently asked questions when conducting research with and for them. These might take the form of training standards for interviewing others, protocols for research supervision, advice on and forms of practical and emotional support in doing empirical work.
Who will be participating?
Anyone over the age of 18 may take part, but they will have to be unpaid carers and identify as LGBTQ+. LGBTQ+ refers to lesbian, gay, bisexual, transgender, queer/questioning + any other identities that typically fall under this umbrella.
Do I have to take part?
Participation in this study is voluntary. If you do decide to take part you can still withdraw without negative consequences at any time. Your data can still be removed until it is no longer possible to identify your individual contribution. You do not have to give a reason. If you wish to withdraw from the research, please email Dr Efpraxia Zamani (e.zamani@sheffield.ac.uk). Please note that by choosing to participate in this research, this will not create a legally binding agreement. Nor is it intended to create an employment relationship between you and the University of Sheffield.
What will happen to me if I take part? What do I have to do?
If you agree to take part, we’d like you to participate in the following ways:
Firstly, we will ask you to participate in two workshops. During the first workshop, we would like to hear from you as to whether you believe LGBTQ+ unpaid carers should be involved in research projects that relate to unpaid caring and why. In addition we would like to hear from you how you would like to participate in such projects. Based on a review of existing PPI toolkits and what you express during this first workshop, we will develop a first version of a PPI toolkit that specifically focuses on the ways LGBTQ+ unpaid carers can be involved in research as peer researchers. We will then ask for your feedback on this (via email or other ways based on your preference) to develop a second version of the toolkit. We will then invite you to the second workshop, where we would like to review and give feedback on the second version of the toolkit and together create its third and possibly final version. Participation in both workshops is not mandatory and you can refuse to review the toolkit if you wish to, without justifying your decision. Each workshop will last approximately 2 hours and both will be hosted online.
Secondly, we would like to ask you to write a short blog post for the purposes of publishing it on our website. We envisage this to be about 500 words (but it can be longer if you wish to). The aim of the blogpost is about sharing your views (and possibly any experiences you might have) with regards to if and why you consider your participation in social care research projects as important and needed, your lived experience of caring as an LGBTQ+ individual and/or your experiences accessing social care in your capacity as an unpaid carer. You may choose to identify yourself in the blogpost or not – this is up to you and it will make no difference in whether the post you prepare gets published or not. We may need to edit your contribution (e.g., for clarity purposes, syntax, grammar) but we will not change the content of your contribution and we will keep you informed throughout the process.
All of the above are voluntary and you may choose to participate in the workshops, or write a blogpost or both, but you do not have to contribute to everything if you do not want to.
If you have questions, suggestions or access requirements about taking part, please get in touch with us and we’ll do our best to accommodate these.
What are the possible disadvantages and risks of taking part?
During the workshops, you will be sharing your experiences with others, and you will be listening to others’ experiences.
In the event that you become upset or distressed, you may choose to withdraw from the project at any time. We may wish to quote some of the things that you say during our discussion in the reports that will be produced from the project, but no one will be able to identify these as your words. Whatever you tell us will be treated as confidential.
What are the possible benefits of taking part?
We hope to create a PPI toolkit that will inform and support researchers and policy makers in identifying and addressing the needs of LGBTQ+ unpaid carers.
This toolkit will be shaped and co-created with you and we hope that this will enable informing researchers and policy makers and indirectly and the longer run it will improve the way LGBTQ+ unpaid carers are engaged in research, in an authentic, supportive and collaborative way.
For your time and labour, we will reimburse you with a £40 high street online voucher for one workshop, £80 high street online voucher for two workshops, and £20 high street online voucher for a blogpost.
Will my taking part in this project be kept confidential?
All the information that we collect about you during the course of the project will be kept strictly confidential and will only be accessible to members of the research team. You will not be identifiable in any reports or publications. If you agree to writing a blogspost, you can provide as much or as little information about you as you wish.
What is the legal basis for processing my personal data?
According to data protection legislation, we are required to inform you that the legal basis we are applying in order to process your personal data is that ‘processing is necessary for the performance of a task carried out in the public interest’ (Article 6(1)(e)). Further information can be found in the University’s Privacy Notice: https://www.sheffield.ac.uk/govern/data-protection/privacy/general. As we will be collecting information about why you might feel excluded from usability testing, this is considered more sensitive data. Therefore, we also need to let you know that we are applying the following condition in law: that the use of your data is necessary ‘for archiving purposes in the public interest, scientific research purposes or statistical purposes' (9(2)(j)).
What will happen to the data collected, and the results of the research project?
Due to the nature of this research, the main output of this project will be the PPI toolkit, in which you will not be identified in any way. If you choose to write a blogpost as well, you may or may not wish you are identified. We will respect any decision you make and it will not factor in with regards to whether you receive a reimbursement and/or whether the blogpost gets to be published on our website. We may use the information you provide us with to write an academic paper and we may wish to quote some of the things that you say during our discussions. No one will be able to identify these as your words, whatever you tell us will be treated as confidential and we will always ask for your explicit consent for your data to be shared in this way.
Who is organising and funding the research?
This research was funded by Research England QR-Policy Support Funding. Gaddum and the LGBT Foundation also participate in this research as community organisations.
Who is the Data Controller?
The University of Sheffield will act as the Data Controller for this study. This means that the University is responsible for looking after your information and using it properly.
Who has ethically reviewed the project?
This project has been ethically approved via the Ethics Review Procedure of the University of Sheffield, as administered by the Information School.
What if something goes wrong and I wish to complain about the research or report a concern or incident?
If you are dissatisfied with any aspect of the research and wish to make a complaint, in the first instance please contact Dr Efpraxia Zamani. Her email address is e.zamani@sheffield.ac.uk If you feel your complaint has not been handled in a satisfactory way, you can contact the Head of the Department of Professor Val Gillet: v.gillet@sheffield.ac.uk . You can also contact the University’s Research Ethics and Integrity Manager, Lindsay Unwin: l.v.unwin@sheffield.ac.uk
Contact for further information
If you have any queries about the project then please contact the Principle Investigator, Dr Efpraxia Zamani e.zamani [at] sheffield.ac.uk
Please keep this sheet as a reminder of the project.