Are you a carer for a Black person living with a serious mental health condition and one or more long-term physical health conditions?
If so, we want you to help us better understand their experience of living with these conditions and how the COVID-19 pandemic has affected them.
We would like to invite relevant carers to participate in this interview study which is being conducted online. It is part of a larger research project about ethnic inequalities in mortality and service use in people living with a serious mental condition and one or more long-term health conditions during the COVID-19 outbreak.
Black Thrive Global is doing the research in partnership with the University of Sussex and King’s College London. Our interviewers are from Black descent and some have experience of using mental health services. All information will be kept strictly confidential.
Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation will involve. Please take time to read the 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.
Below is a summary of the information, but please download and read the complete information sheet before participating.
What is the purpose of the project?
This study aims to explore the experiences of service users from Black African and Black Caribbean living with multiple long-term conditions and mental health problems, as well as carer and healthcare provider perspectives, from three geographical places in England, including South London.
Its aim is to understand the reasons underlying ethnic inequalities in mortality and service use during the Covid-19 pandemic. This will include looking at access and barriers to care and discrimination within health services. Our aim is that recommendations resulting from the research will help to improve health care and make it safer.
Why have I been invited to take part?
You are being invited for an interview as a carer because you are:
- an adult (aged 18 or over)
and you are caring for:
- an adult (aged 18 or over),
- of Black African and Black Caribbean descent,
- with one or more long-term physical health conditions as well as a current, or previous diagnosis of depression, schizophrenia, bipolar disorder or other psychotic disorder.
- who has current contact, or a history of previous contact, with secondary mental health services in England.
What will happen if I take part?
If you volunteer to take part in the project, we would first ask you to seek permission from the person you are caring for, for you to speak to us about their health and health service use. We will provide you with a consent form for you to record their permission.
Once you have their permission, we will ask some screening questions to check your eligibility. We would also ask you some questions about the person you support because it is our intention to include people:
- with a range of different mental and physical health diagnoses,
- from across all the target locations, including South London,
- from every target background, including Black African and Black Caribbean descent.
If you are selected for an interview, we will arrange a date and time to suit both you and the interviewer. We will ask if you have somewhere you could do the interview in private, or, if you would like to be accompanied by a friend or family member.
If you are selected for an interview and decide to take part, we will arrange a date and time to suit both you and the interviewer. We work Monday-Friday 09:00-17:00. We will ask if you have somewhere you could do the interview in private, or, if you would like to be accompanied by a friend or family member.
Because of the COVID-19 outbreak we will do all the interviews remotely. We will give you the choice of whether you would prefer to be interviewed via your computer/laptop on MS Teams or Zoom, or to call a freephone number to be interviewed by phone.
There will be either two or three people on the call, depending on whether a lived-experience or university researcher is conducting the interview. When a lived-experience researcher is conducting the interview, a university researcher/facilitator will record the interview securely.
It will be necessary to collect some personal data. Our screening questions will be about the age category (18-24, 25-34, etc), ethnicity, gender and clinical condition of the person you are caring for.
When the interview has finished, we will stop recording and ask you some demographic questions including about your gender identity and sexual orientation and whether you consider yourself to have a disability or impairment. All the demographic questions have the option: ‘Prefer not to say’.
Do I have to take part?
Participation is completely voluntary. You should only take part if you want to and choosing not to take part will not disadvantage you in any way. Once you have read the information sheet, please contact us if you have any questions that would help you make a decision about taking part.
Once we have made a decision about your participation in the study, we will send you a copy of the Carer Consent form V1 11-06-21 to read and keep. On the day of the interview we will start by recording your responses to the question on the consent form. We need a record to confirm that you have understood the purpose of the interview and how the information you give us would be used, and that your participation is voluntary.
Incentives
If you complete an interview, we will give you £20 or a shopping voucher for this amount as a thank you.
What are the possible risks of taking part?
The interviews will explore experiences of managing the mental and physical health of the person you are caring for during the COVID-19 outbreak. We are aware that if you have had experiences that were distressing it is possible that recollecting them during the interview would be sensitive and might bring up difficult feelings. We will provide you with full support during the whole process.
If the interviewer is concerned about a risk to you, they could contact a senior member of the research team. Dr Josephine Ocloo has considerable experience of conducting sensitive research with people with mental health conditions or experience of medical harm.
What are the possible benefits of taking part?
We cannot promise that the study will help you personally, but your input will inform work to improve services for people including those of Black African and Black Caribbean descent. We will also inform the work of the Patient and Carer Race Equality Framework (PCREF) which seeks to directly tackle race inequalities in mental health. There are four PCREF pilot sites in England and this study is working with South London.
Data handling and confidentiality
Your data will be processed in accordance with the General Data Protection Regulation 2016 (GDPR).
Data Protection Statement
Your data will be processed in accordance with the General Data Protection Regulation 2016 (GDPR). If you would like more information about how your data will be processed in accordance with GDPR please click here.
We can also post this information to you if you do not have internet access.
What if I change my mind about taking part?
You are free to withdraw at any point of the project, without having to give a reason. Withdrawing from the project will not affect you in any way. If you choose to withdraw from the project, we will not retain the information you have given.
Following the interview, you will be able to withdraw your data from the project up until two weeks (14 days) following the interview date. If you decided to do this, you would still receive £20. After 14 days, withdrawal of your data will no longer be possible because it will have been included in the analysis.
What will happen to the results of the project?
The Study Research Team will write up the findings of the project for publication in a peer-reviewed, open-access journal. It is our intention to produce actionable recommendations for improving services. When we record your consent we will ask if you wish to receive a copy of the article when it is published, or a summary of it.
Who should I contact for further information?
Since the COVID-19 outbreak, the study team has been working from home. If you have any questions or require more information about this project, please email us at: COV-EIMMstudy@kcl.ac.uk
What if I have further questions, or if something goes wrong?
If this project has harmed you in any way or if you wish to make a complaint about the conduct of the project you can contact King’s College London using the details below for further advice and information:
The Chair
Psychiatry, Nursing & Midwifery Research Ethics Panel (PNM RESC) rec@kcl.ac.uk
Thank you for reading this information sheet and for considering taking part in this research.
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