Version number: Interview 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.

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 an interview 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 interview is voluntary, and if you volunteer but change your mind later, that’s fine. If you begin the interview and do not wish to continue, you can stop at any time without giving a reason. You can refuse to answer any questions you don’t want to answer. If you wish to remove your data from the research after the interview, you may do so within two weeks of the date of the interview.

The format of the interview can be arranged with you to take account of your ELC/I and minimise energy expenditure. The interview could take place by: email in an asynchronous format (we will email questions to you and you can respond in your own time, via typed responses or audio recordings; online chat (typed) discussion either synchronously or asynchronously; video call (via zoom or similar), either in one (approx. hour long) interview (with breaks), or split into several shorter zoom calls spread out over a period that fits with your pacing schedule (this can be either with cameras on, or audio only), or a phone interview, also either one (approx. one hour) call or several shorter discussions. If you’re still working in academia and are happy to do so, I’ll ask you to keep an energy diary in the run up to the interview, documenting how different parts of the job impact on your energy levels. If you don’t want to do this, that’s fine. The interview will be conducted in English. The interviews will be recorded via audio recording and/or live transcription or through saving typed answers (e.g. emails or chat room).

Confidentiality is important. As these interviews will be done remotely, before we start, I will ensure that the location I am calling/emailing/chatting from doesn’t compromise your confidentiality. We recommend that you also find a place to respond to questions (in whatever format) where others cannot hear or see your responses. If your interview has been recorded, 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. For all transcripts and text-based interviews, the text will be copied and pasted into a word document and any identifying information will be removed. The original recordings, chat or emails will then be deleted. 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. In addition to the interview data we will ask you for basic demographic data (e.g. gender, race, sexuality, etc) in order to consider the ways that ableism may intersect with other forms of discrimination. 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 interview what is going to be possible for you. We can schedule breaks, have several shorter interviews, or do the interview via email over a course of several weeks. If you have experienced ableism and/or have faced significant challenges in pursuing an academic career and the interview 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 stop the interview at any time 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 £30 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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