Version number: workshops HLP version 2
Version date: 8/9/23
Title of the research project: Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Illnesses
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: Julian Gray, Louise Kenward, Mish Green, Khizra Ahmed, Khairani Barokka
Thanks for expressing an interest in participating in our research project which is exploring ideas for better future health and social care for people with Energy Limiting Conditions or Chronic Illness (ELC/I), by running workshops for people with these conditions and Health Care Professionals (HCP) with responsibility for their care. 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 a workshop run in collaboration with Healing Justice London because you are in the UK, over 18 years of age, and you are a health care professional or student who has, or is likely to have, responsibility for people with ELC/I. For more information about ELC/I, see: https://chronicillnessinclusion.org.uk/2021/04/28/what-are-energy-impairment-and-elci/#more-781. Participation in the workshops is voluntary. We understand that health care professionals and students have very busy and hectic lives. If you volunteer but change your mind later, that’s fine. During the workshop, you are free to answer each question in as much detail as you like, or simply not at all, and you are free to leave if you need a break or decide not to continue. However, it will not be possible to locate and delete any information that you have already provided up to that point because of the group nature of the workshop.
The workshop will take place online (on zoom) and will be facilitated by Healing Justice London in collaboration with the project team. The workshop will last 2 hours (including a break). Discussion during the workshop will centre around your experiences as a health care professional in supporting people with ELC/I, including what problems or harms you have seen in the current system, what barriers there are to providing effective support for people with ELC/I, how it feels as a health care professional to support people with ELC/Is for which there are no effective treatments or cures, and what would need to change in the current system to provide more effective support for people with ELC/Is. All workshops will be conducted in English.
Confidentiality is important. We will ask all workshop participants to ensure that they maintain the confidentiality of others in the group and don’t share any information about who was present, or what people said, with others. As these workshops will be done remotely, before we start, we will ensure that the location researchers are calling from doesn’t compromise your confidentiality. We recommend that you also find a place to participate where others cannot hear or see your responses. The workshop will be recorded using zoom’s record function along with the live transcription tool, subsequently editing this for accuracy, using the recording. 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. Saved audio files will be edited to remove any identifying information. There is the option for you to consent to us saving audio files for use in creative outputs from the project (e.g. using your recorded voice in animations, podcasts, etc). This is entirely optional and is separate from consenting to take part in the study. If you are not happy for the audio to be used, then once the transcription has been edited the audio files will be deleted.
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. Data will be stored securely on University secure storage. The anonymised data will be used to write academic publications, produce reports and feed into policy, used for public engagement via media stories, the project website, blogs, and creative outputs such as animations, online network maps, illustrations, podcasts, videos etc.
Costs and benefits of taking part: We recognise that health care professionals have difficult jobs. In these workshops we’d like to focus on how things may be better in the future, but some of that will involve reflecting on what is difficult in the past and present. 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 will provide a list of support organisations which you can contact if you need further support. There are no direct benefits to you taking part in the research. We hope that the results of the research can be fed back to policy makers responsible for health and social care institutions.
If you are unhappy or if there is a problem, please feel free to let us know by contacting Dr Bethan Evans (the principal investigator for the research – contact below). 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 ethics@liv.ac.uk. 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.
Any questions, contact Principal Investigator, Dr Bethan Evans, bethan.evans@liverpool.ac.uk