Workshops people with ELC/I short, version 1
Version date: 8/9/23
Researchers: Dr Bethan Evans, Dr Ana Bê Pereira, Dr Morag Rose, Dr Aaliyah Shaikh, Dr Alison Allam, Dr Anna Ruddock, Dr China Mills, Dr Stephanie Davis
Artists: Khizra Ahmed, Dr Khairani Barokka, Julian Gray, Louise Kenward, Mish Green
Brief summary for people with very low energy:
This is a funded research project where researchers aim to work in collaboration with artists and the community of people living with energy limiting chronic illnesses (see 2 for who is included). We are asking the community who live with these conditions to imagine better futures of health and social care. We want to learn what you would like to change to improve care. Artists will work with you to imagine these futures. There are several options for how you can engage with the artists, either live sessions via zoom or participation via email and other remote ways that allow you to take part over 2 weeks if that is more accessible for you.
You don’t need to have any special abilities or artistic skills. The artists will create, or help you create, the work. You need only to share your views as someone with lived experience. Any research participation can mean there are things that affect you, but we have thought a lot about how best to support you and you can drop out at any time if it’s not working for you. We really value your contributions and hope this project could help making things better for the community when it comes to health and social care (though we can’t guarantee our recommendations will be listened to). If you take part, any outputs from the project won’t mention your name or any identifiable details about you, the only exception being if you would like to have your name associated with any artwork you produce (this is optional).
Thanks for expressing an interest in participating in our research project which is looking at how future health and social care may be improved for people with Energy Limiting Conditions or Chronic Illness (ELC/I). The project activities are artist-led workshops. This document has further information about the study. Have a read through it before you decide whether to take part and if you have any questions, contact the project team. This is a short version of the participant information sheet. If you want to read a more detailed version, or would like an audio version, please email the team on Future.Health.ELC@liverpool.ac.uk
We are inviting you to take part in one or two workshops because you are over 18, live in the UK, have an ELC (even if you don’t have a firm diagnosis yet), and you fit into one of the following 3 groups:
- Muslim women.
- LGBTQIA+ people.
- People of marginalised gender: women (including trans women), trans men, non-binary, intersex and gender nonconforming people).
Participation in the workshops is voluntary. It’s absolutely fine to say no to this invitation and if you say yes, but change your mind, or aren’t well enough later, that is also fine.
The workshop(s) will be led by an artist in collaboration with a researcher. You don’t need any creative skills in order to take part, the artists will create, or help you create, the work. The workshops will be in English. Below is a brief description of the workshop:
- Zine Making Workshops with Julian Gray. In these workshops you’ll be discussing what you would like future health and social care to look like, how you think ageing will affect the care you receive, and what you would hope for people diagnosed with ELC/I in the future. During the session you will discuss these topics with the group. You’ll be provided with paper and pens (these will be posted to you) and asked to create a piece of artwork in response to the themes discussed. If you would like your art work to be part of the zine produced after the workshop you’ll be asked to send this back via either post, or by taking a photo and sending us the photo electronically (this is entirely optional). The zoom workshop will last an hour. Alternatively you can participate via email or online forum (asynchronous).
- Email/online forum (asynchronous) options. Asynchronous versions of the workshop detailed above will be run to allow people with lower energy to take part in the research. You will be given the option of participating via email, or via an online workshop discussion forum. You’ll be sent questions or prompts by the artist/researcher and you’ll be able to take your time to respond (up to two weeks). You can respond with typed responses, audio recordings, or images. If you take part via the workshop online forum you’ll be able to see other participants’ responses too, and engage in conversation with them.
Confidentiality is important: We will ask all workshop members to ensure that they don’t share any information about who was present, or what people said in the workshop, with others. We won’t use your name or any identifying information on any reports, articles or other outputs from the project, the only exception being that you can opt to have your name on the artwork you produce if you would like to do this. We would like to record the workshops – for zoom workshops this will involve using zoom’s record function along with the live transcription tool. You can choose whether you’re happy for us to save and use the audio recording in creative outputs from the project (e.g. animations, online maps, podcasts, etc). This is entirely optional and is separate from consenting to take part in the study. If people have shown visual aids during the video call, we will save screenshots of these, but otherwise we will only save audio rather than visual recordings. For the email/forum workshops, all responses will be saved securely and the original emails/discussions will be deleted. All identifying information will be removed from transcripts and any saved audio files. All data will be stored securely on University secure storage for 10 years then deleted. You have the option to allow us to share anonymised data with future researchers via the UK Data Service, but this is separate to consent to take part in this research.
What will come from the workshops?: There will be art you produce in the workshops and the artists will also use what’s discussed in the workshops as inspiration for their own art work. We will use the art work to share ideas about how health and social care might be better with the public, policy makers, healthcare professionals, students and other researchers. It’s up to you whether you want to have your name associated with the art work you produce. All other outputs from the project (for example academic papers and reports) will be anonymised which means your name won’t be used.
Data use: The University processes personal data as part of its research and teaching activities in accordance with the lawful basis of ‘public task’, and in accordance with the University’s purpose of advancing education, learning and research for the public benefit. Under UK data protection legislation, the University acts as the Data Controller for personal data collected as part of the University’s research. The principal investigator (Dr Bethan Evans) acts as the Data Processor for this study, and any queries relating to the handling of your personal data can be sent to her via the mechanisms outlined at the end of this information sheet. If you would like more information about data protection in this project, please email us and request the longer version of this information sheet.
Costs and benefits of taking part: There may be a risk of payback if you use too much energy. We encourage you to consider which format (live video call or via email/online forum) is possible for you to do without risking payback. Live video call groups will have breaks and it’s fine to take extra breaks if you need to. You can join the workshops with your camera off, lying down and can leave at any time if you run out of energy. We’re also aware from our previous research and our own experiences that people with ELCs may have had bad experiences of health and social care in the past. In these workshops we’d like to focus on how things may be better in the future, but that may involve reflecting on past experiences. If any of the discussion makes you feel upset or distressed, please do let the researcher know via the chat function in zoom. If there are any questions that you feel unable to answer, if you need to take a break, or if you want to leave the workshop at any time, you can do so. We have provided a list of support organisations which you can contact if you need further support (see below). There are no direct benefits to you taking part in the research. We hope you will enjoy the workshop, and that the results of the research can be fed back to people in health and social care institutions but we can’t guarantee it will lead to change in advance.
In recognition of the time and energy you commit to this research by taking part in a workshop, we can offer a £20 voucher.
If you are unhappy or if there is a problem, please contact Dr Bethan Evans (the principal investigator for the research). If you remain unhappy or have a complaint which you feel you cannot come to us with then you should contact the Research Ethics and Integrity Office at firstname.lastname@example.org. When contacting the Research Ethics and Integrity Office, please provide details of the name or description of the study (so that it can be identified), the researcher(s) involved, and the details of the complaint you wish to make.
We hope that the research process has not been distressing for you, but if you are concerned about your mental health, please seek advice from your mental health care team or your GP. In addition, below are some sources that can offer support.
NHS “Get Urgent Help For Mental Health”
Webpage: https://www.nhs.uk/nhs-services/mental-health-services/get-urgent-help-for-mental-health/ – includes how to access local NHS urgent mental health helpline in England
Mind: offer information on a range of mental health topics
Telephone: 0300 123 3393
(Monday to Friday, 9am-6pm)
Samaritans: offer emotional support
Telephone: 116 123 (24 hours a day)
Sane Line: offer specialist mental health and emotional support
Telephone: 07984 967 708
Shout: Charity for Mental Health that offers free text support
Text support: Text “SHOUT” to 85258
Any questions, contact Principal Investigator, Dr Bethan Evans, email@example.com