Experiences of racism in maternal care
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Information for Study Participants
We would now like to invite you to participate in an online survey as part of an original research project concerning racism in maternal care in the UK and Sweden (EMBARC). The research project is organised by King’s College London and Dalarna University in Sweden and is funded by the Swedish Research Council. This document provides information about the project and what it means to participate.
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 following information carefully and discuss it with others if you wish. Please get back to us if there is anything that is not clear or if you would like more information.
Please note that participation is voluntary, and you should only participate if you want to; choosing not to take part will not disadvantage you in any way.
What is the purpose of this study?
Research from the UK documents the persistence of racial inequalities among various groups of racially minoritised women. It is therefore important to increase knowledge about racism in maternal care and highlight the often subtle and unconscious processes that lead to poorer care and ill health. The aim of the study is to use this knowledge to improve maternal care.
Why have I been invited?
You are being asked to participate because you have experienced discrimination on the basis of ethnicity or race within maternal care in the UK. To participate, you need to between 18-59 years old, have experienced discrimination/racism or witnessed your partner being discriminated against in maternal care in the UK within the last 10 years.
What will I be asked if I take part in the study?
The study consists of an online survey with open-ended questions aimed at those who have experienced racism or who have witnessed their partner being subjected to racism in connection with maternal care in the UK. You can respond to questions via your computer or telephone, and you can choose how long you spend answering the questions. You can answer in any language you like. The questions are about:
- The encounter with health care
- Experiences of being discriminated against or treated differently because of your ethnicity, or race
- Views about what how the future of maternal care should look like and what is needed to get there
Do I have to take part?
No. It is entirely up to you to decide whether or not to take part. Taking part in the research is completely voluntary and will not affect any healthcare you will receive in the future. 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 will help you make a decision about taking part.
What will happen to the results of the study?
The results will be published as articles in scientific journals. They will also be presented at academic conferences, in popular science journals and open lectures. Your identity will never be revealed in any publication or presentation. It is up to you to decide whether you would like to access the results of the study, in which case you can download the articles via the project website or contact the lead researcher.
What are the possible benefits of taking part?
There are no direct benefits to taking part in this study. However, your participation will contribute towards a greater understanding of racism in maternal care. This will aid future policies and improvements to maternal health services that will help both care providers and people in the community.
What are the possible risks of taking part?
There are no major risks involved. However, the interview entails that you think about discriminatory experiences you have experienced, which some people may find stressful or unpleasant. It is up to you to decide how much you would like to share and everything you say will be treated confidentially. You can choose not to answer certain questions or stop participating altogether. You may also withdraw any information you have already provided.
Should your participation provoke reactions that would make you need further support afterwards, we can help by guiding you to where such support can be found.
Is Confidentiality guaranteed?
All personal information about you is regarded as strictly confidential. Only the researcher asking these questions and members of the research team will be able to trace the information you have given us to your personal details. The only data we will collect about you are your survey responses. We do not record your IP address. Your answers will be treated in a way that prevents unauthorised access. All responses will be handled anonymously and reported at group level. When we report the results, the information will not be traceable to you. At the end of the project, data will be deleted or archived according to King’s College University's rules for research data. We will store any of your personal information securely in our universities cloud storage. Only the research team will have access to your personal information. This ensures that suitable standards of security and confidentiality are applied. All information collected will be handled with care and in compliance with the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018, the university’s Research Data Management Policy and the General European Data Protection Regulation (GDPR).
Participation in the study is entirely optional. If you decide to take part, you are still free to withdraw at any time and without giving a reason. In order to withdraw, please contact the researcher whose details are listed below.
If you would like more information about how your data will be processed under the terms of UK data protection laws, please visit the link below (this information is also available in printed form if requested)
https://www.kcl.ac.uk/research/support/research-ethics/kings-college-london-statement-on-use-of-personal-data-in-research
Additional Information
If you would feel that study has harmed you in any way, or if you would like to contact us for more information, or to receive additional support, please feel welcome to contact us at the information below. You may also visit the following website for more information on the project www.du.se/embarc.
Dr Sarah Hamed (Email: sarah.hamed@kcl.ac.uk).
Thank you for taking the time to read this document and consider participation in this research.
Professor Stephani L Hatch (Email: stephani.hatch@kcl.ac.uk)
Principal Investigator: UK team
Other researchers: Swedish team:
Fatumo Osman, Associate professor. Dalarna University. Swede. Email:fos@du.se . Elin Ternström, Senior lecturer. Dalarna University. Email: ete@du.se. Maja Bodin, Associate senior lecturer. Uppsala University. Email: maja.bodin@nck.uu.se
Thank you for your interest in the study!