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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Michelle
Lowe
michelle.lowe@gosh.nhs.uk
Michelle
Peter
michelle.lowe@ucl.ac.uk
Wing Han
Wu
wing.wu@ucl.ac.uk
Maternal care related to the fetus and amniotic cavity and possible delivery problems
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Black women face greater risks in pregnancy than women from other backgrounds. Research looking at prenatal tests for genetic conditions rarely includes the voices of Black women, so we know little about their experiences. We need to understand the social and cultural needs that might be unique to Black communities so we can improve antenatal care for all women. The aim of this project is to look at Black women’s experiences of prenatal testing and make recommendations to improve care. To do this, we will first compare whether the number of women who are offered and who accept prenatal testing differs across ethnic groups. Then, using interviews, we will explore the attitudes and experiences of Black women and professionals towards prenatal testing. Parents and professionals from parent support charities will be asked to share ideas about how these organisations can best reach out to women and families from Black communities. We will put these findings together to develop training for healthcare professionals around counselling and support so that the needs of all who are offered prenatal testing, including Black women, are addressed. The findings will also be used to create materials that will improve access to parent organisations for parents from this community who might seek support for their prenatal testing decisions. In addition, discussions with Black women about the barriers to taking part in research studies will inform recommendations for researchers on how to reach and include more people from diverse backgrounds. Most importantly, this project will amplify the voices of a group often unheard. By listening to those who experience ethnic health inequalities, this project will offer ways to ensure that Black women and their families are offered culturally sensitive maternity care.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
WP1 a) Clinical audit • Data recorded before January 2019 and after January 2024. • Clinical data that describes anything other than results relating to high chance screening, the subsequent offer and uptake of NIPT or invasive testing in pregnancy, and pregnancy outcomes related to the high chance screening result and/or anomaly identified on scan. b) Scoping review • Data published before 2000. • Publications not available in English. • Studies that report the experiences and/or perspectives of Black people regarding genetic testing outside of the prenatal setting. • Studies where the ethnicity of participants has not been included to allow differentiation from other ethnic groups within the data. • Studies exclusively focused on test development, diagnostic yield and clinical utility. • Studies with a molecular/biological focus. WP2: a) Parent interviews • Women who do not identify as Black (Black African/Black Caribbean/Black British/mixed Black heritage background) and who have not been offered prenatal testing (non-invasive prenatal testing and/or invasive diagnostic testing) following a high chance result from first/second trimester screening and/or anomaly identified on scan. • Under 18 years of age. • In an especially vulnerable psychological and/or emotional state, as determined by their clinician. b) Professional interviews Exclusion criteria • Professionals with no experience of discussing prenatal screening or testing with women and their families. • Professionals with no experience of supporting women and families from Black, ethnic minority communities and other marginalised groups throughout their pregnancy. c) Parent survey • Women who do not identify as Black (Black African/Black Caribbean/Black British/mixed Black heritage background) and who have not been pregnant in the last 5 years (dated from when REC approval is received). • Under 18 years of age. WP3: Focus groups with parents, professionals, and researchers • Women who do not identify as Black (Black African/Black Caribbean/Black British/mixed Black heritage background) and who have not been offered prenatal testing (non-invasive prenatal testing and/or invasive diagnostic testing) following a high chance result from first/second trimester screening and/or anomaly identified on scan. • Under 18 years of age. • In an especially vulnerable psychological and/or emotional state, as determined by their clinician. • Professionals with no experience of supporting women and families from Black, ethnic minority communities and other marginalised groups throughout their pregnancy. • Researchers not interested in adopting inclusive research practices.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Michelle
Lowe
michelle.lowe@gosh.nhs.uk
Michelle
Peter
michelle.lowe@ucl.ac.uk
Wing Han
Wu
wing.wu@ucl.ac.uk
The study is sponsored by GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST and funded by THE HEALTH FOUNDATION .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
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for Trial ID: CPMS 60688
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