Participant information sheet
Material Bodies, Precarious Work, and Rest: Reflections on ‘gig economy’ work and rest from the point of view of disabled, neurodivergent people and people with chronic illness
Researcher: Ioana Cerasella Chis, firstname.lastname@example.org
Who I am and what I hope to learn:
I am a PhD student at the University of Birmingham, based in the Political Science and International Studies Department. I’m interested in learning about experiences of insecure work among disabled people and people with chronic illness. The formal research questions for my project are the following:
● How have conceptions of productive work been shaped by the widespread insecure work of the ‘gig economy’?
● How do the insecure working lives of disabled people and/or people with chronic illness influence their experience of the body?
● What change is necessary for reshaping the conditions of work and living for disabled people in the UK?
Context and purpose of the study:
This project seeks to gather and disseminate accounts of what it means to be working on insecure contracts as a disabled, neurodivergent person, and/or as someone with chronic illness in the UK. By ‘insecure work’ I mean the following: zero-hours contracts, short-term contracts, agency work, casual work, self-employment, part-time, and payment-by-results.
This is a doctoral research project that started in October 2019 and will take place over approximately 3 years (full-time, or longer than 3 years if I change to part-time). In 2020, I am undertaking one-hour interviews with up to 30 participants, individually. At the end of each interview I will be asking participants whether they would be able and willing to keep a diary (paper-based or on a smartphone) over 8 weeks, documenting daily activities (especially in relation to work, rest, and living conditions). You can choose to be part of either both or one of the two activities.
What difference will this project make?
I have written about it here: https://materialbodies.work/difference.
Who can participate:
As this study is about the experiences of disabled, neurodivergent, and chronically ill workers in the gig economy, two criteria need to be met in order to be part of this study:
1. If you are currently working (or have recently worked) on either of the following types of contracts: zero-hours contracts, as self-employed, on short-term contracts, as an agency worker, part-time, as a casual worker, on commission (with payment-by-results).
2. If you self-identify as disabled, neurodivergent, and/or if you experience a chronic illness (including, for instance, experiences of physical or sensory impairments, mental illness or distress, learning difficulties). I will be seeking to interview a diversity of people across the gender, sexuality, ethnicity, nationality and migration status, and class spectra.
If, after reading the above, you think you are eligible to participate but aren’t entirely sure, please do feel free to email me. I will try to engage with participants who have differing experiences of work and the body, to the extent that I can (due to time and resource constraints, I estimate that I would be able to interview 30 participants).
What your participation would be (if you agree to take part):
You can participate in two ways (either both or one of them):
If you agree to be interviewed, with your permission after signing the consent form (or being audio recorded consenting), the conversation will be audio recorded. This is so that I can later transcribe the discussion, reflect on what is said, analyse the interview, and link it to others’ experiences. You can seek further clarification from myself if there is anything which you do not understand, prior to or during participation. The interviews can take place either indoors, or outdoors – either while sitting or walking, depending on your preference. During the COVID19 lockdown, I am offering to hold the interviews via Skype.
You are free to skip any questions that you do not want to answer. During the interview, we will discuss informally aspects of your everyday life in relation to how you manage your work, what your views on resting are, what benefits and struggles ‘flexible’ work poses, and how you envisage a society in which work and disability are valued and experienced differently. The interview itself will take approximately one hour. Before the interview, we will spend 10 or more minutes to go through any questions you may have about the study, and to make sure that you understand the implications of taking part. Half-way through the interview, I will offer to have short break. Then, after the interview, we will spend a few minutes to talk about how you feel the discussion went, and whether you would be happy to keep a diary. More info. on the practicalities of the interviews can be found here: https://materialbodies.work/interviews
If you agree to keep a diary to record your experiences of work and living, you can record them either on paper (a diary will be provided to you by myself), or on your smartphone (through audio recordings, text, photos, or videos), for approximately 8 weeks. During this period, you will be encouraged to take note of your (if possible, daily) experiences of working, resting, and other aspects of living. More info: https://materialbodies.work/diaries
What happens if I change my mind after signing the consent form?
If you decide to take part, you will be given this information sheet in electronic and also hard copy form (if the interview takes place face-to-face) along with a consent form. Participation is voluntary and you are free to withdraw within three months after the interview, without giving any reason. In that case, your data will be omitted from the study. Withdrawal during or after the interview will not impact upon your entitlement to be compensated. However, if you do not submit diary entries over the duration of eight weeks, you will not be eligible for a voucher.
What are the benefits of taking part?
The results will be published and shared to improve current understandings of precarious work and experiences of it among disabled individuals and people with chronic illness. By taking part you can contribute to shaping current understandings of work, ‘the gig economy’, disablement, and the body. I will also plan to find ways to use some of the stories (or part of the stories) in a creative manner, by collaborating with an artist (time and resource-permitting). Any ideas for how else I could make this project useful would be very welcome!
- Interviews: £15/interview for participants who live outside of London; £16 for participants who live in London.
- Travel expenses, if the interview takes place face-to-face: a flat fee of £5 for participants who live outside of London; £6 for participants who live in London.
- Diary entry submission: a supermarket voucher/participant worth £15 for participants who live outside of London; £20 for participants who live in London.
Each participant who submits diary entries (either via an app or by writing them in a hard copy notebook) will be asked to select one supermarket from the following list: Sainsbury’s, ASDA, Tesco, or Morrisons.
Rationale behind the sums above:
I chose the rates to be in line with the Real Living Wage (set by the Living Wage Foundation) for 2019/2020. The rates are: £9.30/hour across the UK and £10.75/hour in London. I anticipate that the interviews (overall, including introductions and discussion at the end) will take place over 1.5 hours. For vouchers, I used standard options found online. For travel expenses, I chose a manageable standard rate.
The funding will come out of my Doctoral ESRC Research Training Support Grant.
Will what I say in this study be kept confidential?
All information collected about yourself (your name or pseudonym and other identifiable characteristics) will be kept strictly confidential (subject to legal limitations). Confidentiality will be ensured in the collection, storage and publication of research material. The audio file of the interview will be transcribed by myself. During transcription, I will use a pseudonym to hide your identity. I will also replace other names of individuals and organisations that you may mention during the discussion. This is to avoid anyone being able to identify you. The transcripts will be held on a highly secure platform that the University of Birmingham provides to researchers. The files will be encrypted and password-protected. If you agree to keep a diary, the same principles of removing personal data will apply.
The interview will be held in a space where you feel your privacy can be maintained. Nobody else will know that you are a participant in this study. Other participants will not know who else has been interviewed. A consent form will be provided before the start of the interview, and we will have time to go through anything you would like to ask me about the project. Both yourself and I will keep a copy of the signed form (or of the audio file with the consent); the form complies with European Union General Data Protection Regulation (GDPR) and has been approved by the University of Birmingham’s Ethics Committee.
Data generated by the study will be retained in accordance with the University’s policy on Academic Integrity and will be kept securely in paper or electronic form for a period of ten years after the completion of a research project, in the UK Data Archive. Only myself, my supervisors, and (if requested, for audit purposes) the funding body (the Economic and Social Research Council) can access the transcripts (after I have anonymised them).
After the interview and/or diary entries:
I will transcribe the interview and diary entries and look for patterns, themes and connections between experiences. I may use direct quotes in my thesis or other research publications, but participants will only be identified with a pseudonym.
How to ‘opt in’:
Please either email me at email@example.com or visit the website materialbodies.work/join; you can also call or text me on 0774 2658 739 or send me a letter with your contact details at Ioana Cerasella Chis, 2nd Floor, Muirhead Tower, University of Birmingham, Edgbaston B15 2TT
What will happen to the results of the research study?
The results of the research study will be published in my doctoral thesis (as anonymised quotes and paraphrased accounts), in potential journal articles, conference presentations, reports, or arts projects. A copy of the findings of the study will be sent to each participant (as a short, accessible, 3-page report), and updates regarding the study will be posted on the website materialbodies.work.
Who is funding the research?
The scope, purpose, design, and approach to the study were set entirely by myself, when I wrote the research proposal. ESRC (the Economic and Social Research Council) are funding this project, as a result of an open research proposal competition which I successfully secured. I am registered as a full-time student at the University of Birmingham in the Political Science and International Studies Department. The quality of my work is reviewed by my supervisors (Dr Emma Foster and Dr Laura Jenkins) and by the University and ESRC through their standards and regular reviews.
Who has reviewed the study?
The research has been reviewed and approved by the University of Birmingham Research Ethics Committee.
Contact for Further Information
If you have any concerns about the way in which the study has been conducted, you should contact the University Research Ethics Committee at firstname.lastname@example.org.