South Asian voices needed for hereditary cancer research
- 9 hours ago
- 3 min read
How does it feel to receive a diagnosis of Lynch syndrome and live with an inherited cancer risk? A University of Leeds research project is looking to understand these experiences specifically within South Asian communities in the UK.
Researchers are inviting South Asian adults with a confirmed diagnosis of Lynch syndrome, or a confirmed BRCA1 or BRCA2 alteration, to take part in a one-to-one interview about their experiences.
At Lynch Syndrome UK, we know that lived experience is an important part of improving understanding, support and care. We are therefore pleased to help share this opportunity and encourage eligible members of our community to consider taking part.
Why this research matters
Being diagnosed with Lynch syndrome can affect many different aspects of life. It is not simply a genetic test result. It means living with an increased risk of cancer and information that may also be relevant to other members of your family.
However, people's experiences of hereditary cancer conditions are not necessarily the same.
This University of Leeds study is specifically seeking to understand the psychological and social experiences of people from South Asian backgrounds who are living with Lynch syndrome or a BRCA1 or BRCA2 alteration. The research team highlights that the experiences of South Asian communities have not previously been explored in this way within UK cancer genetics and hereditary cancer research.
Better representation in research matters. Hearing directly from people about their own experiences can help researchers build a fuller picture of what it is like to live with an inherited cancer risk and can help inform future research and recommendations about care.
What does taking part involve?
The study involves one interview lasting up to an hour.
Participants can choose to have the interview:
online by video call
by telephone
face to face if they live in West Yorkshire.
An interpreter can also be arranged if needed.
The researchers are using an approach called photo elicitation. Before the interview, participants will be asked to choose or take a photograph that represents something about their journey of receiving and living with their diagnosis.
The photograph will then be used as part of the conversation, alongside questions about receiving a diagnosis, living with an inherited cancer condition, wellbeing, relationships with others and what helps people cope.
Participants do not have to answer any question they do not want to answer and can take a break or stop the interview if they wish.
Who can take part?
To be eligible, you must:
have a confirmed diagnosis of Lynch syndrome or a confirmed BRCA1 or BRCA2 alteration
identify as being from a South Asian background
be aged 18 or over
currently live in the UK.
People who are currently undergoing genetic testing but do not yet have a confirmed diagnosis are not eligible to take part.
Participants will receive a £25 shopping voucher after completing the interview as a thank-you for their time.
How could the research help?
The study aims to better understand the lived experiences of South Asian people with hereditary cancer conditions.
By making sure a wider range of voices and experiences are represented in research, studies like this can contribute to a better understanding of what people living with inherited cancer risk may need from healthcare, information and support.
For LSUK, it is important that research into Lynch syndrome reflects the diversity of the community affected by it. We hope eligible members of our community will consider sharing their experiences and helping to build the evidence that can ultimately contribute to better outcomes and care.
Interested in taking part?
The research is being conducted by Saman Hussain, Trainee Clinical Psychologist at the University of Leeds, as part of a wider University of Leeds research team.
If you would like to take part, or have any questions about the study, contact:
Saman Hussain Email: ll14s8h@leeds.ac.uk
You can also read the full participant information sheet before deciding whether the study is right for you:
The study has been reviewed and approved by the University of Leeds School of Medicine Research Ethics Committee, reference SoMREC 4263.
