Sample Participant Information Sheet
447675044196000College of Health and Life SciencesDepartment of Clinical Sciences PARTICIPANT INFORMATION SHEET Title of the study: An exploration of experiences and beliefs of Black, Asian and Minority (BAME) community dwellers with persistent pain in London. Invitation to participate: You are being asked to take part in this research project from the Department of Clinical Sciences at Brunel University. You are being invited to participate because you have identified yourself as a culturally diverse descendant of Black, Asian or other Minority Ethnic group (BAME), and you have persistent muscular or skeletal pain. Before you decide, it is important to understand why the research is being done and what it will involve. The following information will explain, in detail, your involvement in this study, any risks you may have, and the reason for the study. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information. What is the purpose of the study?The study will explore the experiences and belies of Black, Asian and Minority (BAME) community dwellers with persistent pain in London. It will also attempt to explore what support you might need to help you manage your pain. Why have I been invited to participate?You are being invited to participate because you have identified yourself as a culturally diverse descendant of Black, Asian or other Minority Ethnic group (BAME), and you have persistent muscular, skeletal or joint pain. You live in Central or Greater London, and you are able to converse in English with the researcher. You are also able to read and understand this information sheet, and able to give Informed Consent upon agreement to participate in the study. Do I have to take part?You should not take part in the study if you do not wish to do so. Participation is entirely voluntary and you may withdraw at any time during this study without giving a reason. This will not affect any care you receive publicly or privately. What will happen to me if I take part?If you choose to take part, the researcher will ask you to confirm your home address in London and chose a preferred method for communication (e.g. post, email or telephone). We will then ask you to agree to and sign the Informed Consent form. We will ask you to then scan and email this to a specified email address. We will also ask that you get a witness to sign the form confirming that you were the actual signee.You will then be screened over the phone by a member of our research team for eligibility. This is to confirm that the pain you suffer from is of muscular, skeletal or joint pain. You will be screened by a qualified physiotherapist. Therefore, if the researcher believes you need to be directed to your GP or another healthcare provider, they will discuss this with you first. The physiotherapist might need to contact your GP if it is in your best interest. We will then arrange for a convenient time and date for the virtual, in-depth, one-to-one interview. You will be able to choose the platform this is done through (for example; telephone, Skype or Zoom). We will reimburse you for your time and any costs incurred with a ?10 shopping voucher. Regardless of the meeting’s style, you will only be audio-taped. There will be no video-taping in the interviews.At the start of the interview, you will also be asked about your pain and socio-demographic data; such as age, and gender. You will also be asked about your ethnicity, marital status, employment status, education. You can choose to volunteer this information at your own will. This information will help us find any trends in the data. All information will be presented in averages when the research is presented, and none of it will directly reflect you. At the interview, you will be asked about your experiences of pain, what you think the pain means and what support you might need to help you manage your pain. The interview will last anywhere from 20-60 minutes depending on how much you are willing to share with the researcher. The interview will be recorded on a digital voice recorder. What are the possible disadvantages and risks of taking part?The questions are not intended to be invasive or offensive. However, if you find any of the questions embarrassing or too personal, you should choose not to answer these questions. Only share the information that you feel comfortable discussing with the research team. And if you feel uncomfortable, we can change the question, or end the interview without having to give a reason. This will not affect any care you receive in any way.No reference will be made to you directly in any write up of the research. You will remain anonymous all throughout. All data you give will be anonymous and will be stored securely online. Only the main researcher will have access to the data. What are the possible benefits of taking part?You will be reimbursed you for your time and any costs incurred with a ?10 shopping voucher. In addition to this, you will be meeting with a Senior Lecturer who is an experienced researcher and specialist pain physiotherapist. The researcher will also invite you to any virtual information events that will be held around London about pain, or to share the study results. You will also be invited to webinars or social media platforms to discuss results, if government restrictions on social distancing are still in place. Additionally, the results of this study may assist in uncovering new information about the patient to healthcare professionals’ relationships and aid the development of new guidelines and/or management models. Will my taking part in this study be kept confidential?Your identity will remain unknown. You will be assigned a participant code. The code will have no participant-identifiers, meaning it will not identify you as an individual. All references to specific people, health care professionals, GPs or physiotherapist will be omitted in the transcript and final write up of the study. The research team involved in data transcription and analysis will be unaware of your identity. Any information obtained in this study may be published in appropriate journals or presented at professional meetings. In such publications or presentations, you will not be identifiable. All collated information and data obtained in connection with this study, will be treated as privileged and confidential. All written information will be stored in a secure area and will not be released to any unauthorised person(s).If the researcher believes you need to be directed to your GP or another healthcare provider, they will discuss this with you first. The researcher might need to contact your GP if it is in your best interest. Consent and Option to Withdraw from the Study:By you, the participant, reading the information sheet and signed the Informed Consent form; it will be deemed you have given your consent to participate in the study. You should not take part in the study if you do not wish to do so. Participation is entirely voluntary and you may withdraw at any time during this study without giving a reason. Once the interview has been completed, you have up to 35 days to withdraw from the study if you wish to do so. You do not have to give a reason for withdrawal. This will not affect any care you receive publicly or privately. Who is organising and funding the research?This research is being organised by the College of Health and Life Sciences at Brunel University. This research projects is funded by the Public Engagement Fund at Brunel University London. What are the indemnity arrangements?Participation in this study will not affect health-related insurance. Who has reviewed the study?This study has been reviewed and approved by the College of Health and Life Sciences Research Ethics Committee, at Brunel University London.Passage on the University’s commitment to the UK Concordat on Research IntegrityBrunel University is committed to compliance with the Universities UK Research Integrity Concordat. You are entitled to expect the highest level of integrity from our researchers during the course of their research.If you have any more questions, please do not hesitate to ask. Queries should be directed in the first instant to the Chief Investigator, whose name appears below: Dr Dana Maki (Chief Investigator)dana.maki@brunel.ac.uk You can also contact the research assistant on:Miss Preet Singh (Research Assistant)1603410@brunel.ac.uk Complaints and concerns about the conduct of the research, please contact: Professor Christina Victor, Chair College of Health and Life Sciences Research Ethics Committee Christina.victor@brunel.ac.uk ................
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