Participant Information Sheet
Title of the study: Well-being of Informal Caregivers during COVID-19 – a Photo-elicitation Study
Researcher: Anni Lindroos (B00330719@studentmail.uws.ac.uk)
Supervisor: Nicola Douglas-Smith (Nicola.Douglas-Smith@uws.ac.uk)
Ethical approval number: 2020-13343-11744
You are being invited to take part in a research study. Before you decide, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.
What is the purpose of this study?
The purpose of this study is to expand the current research on caregiver well-being by using photographs and an online survey that allows you to express the most important aspects of your well-being. The research is interested in knowing if the uncertainty, lockdown measures and social isolation introduced by COVID-19 have affected the well-being of informal caregivers and if so, how.
Why have I been chosen?
An informal caregiver is an unpaid person who provides care to a family member, partner, friend of neighbour experiencing long-term physical or mental ill health, disability, or problems related to old age (Carers UK, 2015, as cited in Vasileiou et al., 2017). You can take part in this research if you identify as an informal caregiver.
Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part, you will be asked to sign a consent form with a memorable word of your choice. If you decide to take part, you are still free to withdraw until one week after completing the study without giving a reason, with your memorable word. Participation is completely anonymous.
What will happen if I take part?
If you decide to participate, you would sign a consent form where you would give informed consent of your participation. You will be asked to fill in a survey that would take no longer than an hour to complete. In the survey, you will be asked to attach a picture or multiple pictures of your choice and describe why the pictures were chosen and what they represent to you. You will also be asked questions about your well-being and current situation. You will then be provided with a debrief sheet where you will be reminded of your rights and informed how your data will be used. If you decide to use photographs that you took yourself, you will also need to hand the ownership of your pictures to the researcher with a photo release form that will appear at the end of the survey. This is asked so that these pictures can be published in the final research report. A total estimated time of participation is approximately 1 hour 35 minutes, including choosing and uploading the photographs, answering the questions and signing the contracts.
What are the possible disadvantages and risks of taking part?
It is unlikely that this study will cause distress, but stress or discomfort may result because of the sensitive nature and the timing of this research project. You are advised not to participate in any activity that may cause you distress or discomfort. You can refuse to answer any questions that you feel uncomfortable with. You will have the right to end the participation at any time and withdraw your participation until one week after completing the study. You can withdraw from the study by emailing your memorable word that you chose at the beginning of your participation to the researcher (B00330719@studentmail.uws.ac.uk).
What are the possible benefits of taking part?
There are no direct benefits in participating. This study could possibly help other caregivers or health care providers to understand the reality behind caregiving. The main goal of this study is to give a voice to people in the middle of a phenomenon. I hope that this study can play a part in raising awareness on what is really important in today’s caregiving, and how societal crisis such as a global pandemic may play part in the well-being of caregivers.
Anonymity
Participation in this study was completely anonymous. However, it is important to notify that the web-page used to collect your answers to this study (QuestionPro) may collect your IP-address. This study does not take note of or use your IP-address.
Data Protection Privacy Notice
The data controller for this project will be University of the West of Scotland (UWS). The UWS Data Protection Office provides oversight of UWS activities involving the processing of personal data and can be contacted at dataprotection@uws.ac.uk. UWS’s Data Protection Officer is Emma Cockrow and she can also be contacted at dataprotection@uws.ac.uk.
Your personal data will be processed for the purposes outlined in this notice. QuestionPro survey site may collect IP address at the local geographical level. The researchers do not access this information as part of the research being conducted or use this information to identify participants. Your personal data will not be processed, and any traceable information will be either removed or replaced with pseudonyms where appropriate. If you are concerned about how your personal data is being processed, please contact UWS in the first instance at dataprotection@uws.ac.uk. If you remain unsatisfied, you may wish to contact the Information Commissioner’s Office (ICO). Contact details, and details of data subject rights, are available on the ICO website at: https://ico.org.uk/for-organisations/data-protection-reform/overview-of-the-gdpr/individuals-rights/
What will happen to the results of the research study?
Final year dissertation that will be written up to a scientific report and possibly presented in the British Psychological Society conference.
Who has reviewed the study?
ESS Ethics Committee – Approval Number: 2020-13343-11744
Contact for further information
If you require any further information please contact:
Researcher: Anni Lindroos
University of the West of Scotland,
High Street, Paisley, PA1 2BE, UK
E-mail address: B00330719@studentmail.uws.ac.uk
Supervisor: Dr Nicola Douglas-Smith
University of the West of Scotland,
High Street, Paisley, PA1 2BE, UK
Telephone: 0141 848 3310
E-mail address: Nicola.Douglas-Smith@.uws.ac.uk
Thank you for considering participation in this study.
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