Version number: Focus group 1, short version 1

Version date: 31/8/23

Participant Information Sheet

Title of the research project: ‘Cripping’ the exhaustion economy: radically reimagining the neoliberal academy from the sick bed.

Lay title: Reimagining the Exhaustion Economy in UK academia from the perspective of people with Energy Limiting Conditions

Researchers: Prof. Bethan Evans, Dr Alison Allam, Dr Anna Ruddock   

Thanks for expressing an interest in participating in our research project which is aiming to explore the problems of burnout and ableism in UK academia from the perspective of academics with Energy Limiting Conditions (ELCs)  or Chronic Illness (ELCI) (For more information on what ELCs are, see Chronic illness inclusion’s explanation here: https://chronicillnessinclusion.org.uk/2021/04/28/what-are-energy-impairment-and-elci/#more-781). 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 me. 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 contact me on bethan.evans@liverpool.ac.uk.

We’re inviting you to take part in a focus group because you are currently working, or have previously worked or completed a PhD, in UK universities and you have an ELC/I (you can take part if you have the symptoms but no formal diagnosis yet). Participation in this focus group is voluntary, and if you volunteer but change your mind later, that’s fine. During the focus group, 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 the focus group 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 focus groups.   

The format of the focus group will be a form of participatory network mapping. This means that members of the focus group will work collectively to produce a map of all the institutions that play a role in the UK academic political economy (e.g funders, publishers, REF, NSS, etc), and discuss experiences of interacting with those institutions. The focus group will be held remotely via video call. You are very welcome to participate in a way that limits energy expenditure for you (e.g. with your camera turned off, lying down, etc). We envisage that the focus group will last 1-2hrs but with breaks. We will be using an online whiteboard to map the institutions and if you are unable to take part in a video call due to energy limitation, you can opt to contribute to the whiteboard in your own time. The focus group will be conducted in English.

Confidentiality is important. We will ask all focus group members to ensure that they maintain the confidentiality of the focus group and don’t share any information about who was present, or what people said, with others. As this focus groups will be done remotely, I will ensure that the location I am calling from doesn’t compromise your confidentiality and we will ask all members of the focus group to do likewise. The focus group will be recorded via audio recording and/or live transcription. If people have shown visual aids during the video call, I will take screenshots of these, but otherwise will only save audio rather than visual recordings. You can choose whether you’re happy for us to save and use audio recording for use 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 you are not happy for the audio data to be used, then once the transcription has been edited the audio files 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.

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. 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: Taking part in this research will take energy that is in short supply to people with ELC/I, and that energy use carries risk of ‘payback’. We will do all we can to ensure that involvement doesn’t exceed the energy you have available so please do let us know as we arrange the focus group what is going to be possible for you. We will have breaks during the focus groups. If you have experienced ableism and/or have faced significant challenges in pursuing an academic career and the focus group topic is upsetting to you, please do let us know. You don’t have to answer any question you’re not comfortable answering, we can pause the focus group at any time and you are free to leave or take a break. There is a list at the end of this document of support organisations which you can contact if you need further support. There are no direct benefits to you of taking part in the research. We hope that the results can be fed back to people in key academic institutions, and that the insights offered may help inform more equitable practices, but we can’t guarantee this in advance.

 In return for your time and energy: we offer you a £50 voucher.

 If you are unhappy or if there is a problem, please feel free to let me know by contacting 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 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.

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) 

Website: http://www.mind.org.uk/  

Samaritans: offer emotional support  

Telephone: 116 123 (24 hours a day)     

Website: www.samaritans.org  

Sane Line: offer specialist mental health and emotional support  

Telephone:  07984 967 708 

Website: www.sane.org.uk  

Shout: Charity for Mental Health that offers free text support   

Website: https://giveusashout.org      

Text support: Text “SHOUT” to 85258   

Resources: https://giveusashout.org/get-help/resources/    

Any questions, contact Principal Investigator, Prof. Bethan Evans, bethan.evans@liverpool.ac.uk

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