Participant Information Sheet
We would like to invite you to take part in a research study. Before you decide we would like you to understand why the research is being done and what it would involve you for. Please read the information below. If you have any questions, please email the relevant persons at the end of this form.
Background
Stroke is a medical condition in which poor blood flow to the brain causes cells to die. Despite improvements in stroke care, people report a wide variety of emotional problems after stroke, coupled with reduced quality of life. So far, there has been research exploring traumatic medical events and positive changes experienced as a result of these events. There has been limited research looking at growth after experiencing a stroke.
What is the purpose of the study?
The research is looking at positive changes/growth since experiencing a stroke. Research suggests that after a stroke people can experience growth in their priorities, beliefs and what they value. It has been suggested that the majority of recovery occurs within 6 months and 2 years of experiencing a stroke. Little research has explored this time period of recovery to investigate areas where people may experience more positive changes in their beliefs and values and areas where they may need more support.
Why have I been invited?
You have been invited to take part because you may be eligible to take part in the study. The study is looking for individuals who have had a stroke between six months and two years ago. You must also be able to understand English and be at least 18 to take part.
Do I have to take part?
No, participation is completely voluntary. If you decide to take part, you will be asked to give your consent by ticking a few boxes on the online survey tool to indicate that you agree to take part. You are free to withdraw from the study at any point whilst completing the questionnaire, your answers will not be saved, and you do not have to provide a reason for this. However, if you just click off the survey window your answers will not be saved. If you choose to complete the survey, once you have clicked the ‘Finish’ button your answers will be summitted and you will not be able to withdraw your data. This is because the data is all anonymous so your answers cannot be identified. Participation will not affect your medical care or legal rights.
What will happen if I decide to take part?
If you wish to take part, this will involve completing an online questionnaire. You will also be asked to provide some basic information about yourself, such as age, gender etc. As this will all be done online, you can complete this wherever, and whenever convenient to you. This whole process should take between 20-30 minutes to complete.
What happens if I start the survey and want to leave during it?
If you start the survey and would like to leave, simply press the finish later button if you would like to return the survey at a later date, you will also be given additional support details if you feel as though you require further support. If you would like to withdraw from the study whilst completing the survey, that is completely fine as long as you have not submitted it, either click off the page or press finish later which will redirect you to the relevant additional support numbers.
What are the possible disadvantages and risks of taking part?
Participating in the study will require up to thirty minutes of your time; this may be inconvenient for you. The questionnaire requires you to reflect on your diagnosis, and also your current feelings towards your stroke, and your life in general since your diagnosis. Specifically, you will be asked about different areas of growth since experiencing a stroke, social support, quality of life and questions about the impact that the stroke has had on you. You may find that this could trigger emotional distress or difficult memories. It is possible that this may cause you some emotional distress. The names and contact details of helpful support organisations will be provided to all participants at the end of the study or when you click the ‘Finish Later’ tab on the online survey. This information will be given at the end of the questionnaire, or if you decide to finish sooner.
What are the possible benefits of taking part?
We cannot promise that you will have any direct benefits from participating in this research. We hope that this research will help us understand more about living with a stroke using a strengths-based approach to help identify potential areas that may be strengths and possible areas of difficulties to inform therapeutic interventions.
What if there is a problem?
If you have any concerns about any part of this study, you can contact the researcher or their research supervisor (Emma Lewis – contact details below), who will do their best to answer your questions. Contact information is at the end of this information sheet.
How will we use the information you give us?
We will need to use information from you for this research project.
The information will not include your initials, name, or contact details as the study is anonymous. We will not know if you have completed a response and your responses will be assigned a non-identifiable code number.
We will keep all information about you safe and secure.
Once we have finished the study, we will keep some of the data so we can check the results. We will write out a report with the data, however, as the data is anonymous no one will be able to identify you.
What are your choices about how information is used?
You can stop being part of a study at any time, without giving a reason but we will keep your data if you have submitted or returned by the freepost envelope.
We need to manage the records in a specific way for the research to be reliable. This means that we won’t be able to let you see or change any data we hold about you.
Where can you find out more about how your information is used?
You can find out more about how we use your information:
What Will Happen To The Results Of The Study?
After the study is completed the results from all participants will be analysed and presented in a report written for a scientific journal and as part of a thesis project. Results will also be presented at conferences and professional development events. A summary of the findings will be given to the organisations which have helped recruit for this study.
Who Is Organising And Funding The Research?
This research is being undertaken as part of a Doctoral thesis in Clinical Psychology. The research is funded and regulated through the University of Hull, UK. Some sections of data collected during the study that are relevant to participation may be assessed by responsible individuals from the University of Hull or from regulatory authorities to ensure that appropriate guidance was followed by the researcher.
Who Has Reviewed the Research?
This research has been reviewed by the University of Hull Research Ethics Committee and received a favourable review. This protects the interests of research participants.
Who will sponsor this research?
This research will be sponsored by the University of Hull.
Who do I need to contact if I need to make a complaint?
Emma Lewis – E.Lewis@hull.ac.uk
Contact details of researcher and research supervisor
In the first instance please contact:
Researcher: Ariyana Reddy (a.reddy-2021@hull.ac.uk)
Research Supervisor: Emma Lewis (E.Lewis@hull.ac.uk)
Alternatively please contact university-secretary@hull.ac.uk
If you require additional support at any point, please contact:
- Your GP
- Stroke Association Helpline: 0303 3033 100
- NHS Support: https://www.nhs.uk/service-search/other-services/Stroke-information-and-support/LocationSearch/391
- Headway: helpline@headway.org.uk or 0808 800 2244
- The Brain Charity: 0151 2982 999/ https://www.thebraincharity.org.uk/get-help/
- Different Strokes: 0345 130 7172 or 01908 317 618 or https://differentstrokes.co.uk/
Thank you for reading this information sheet and for considering taking part in this research.