The project
Being diagnosed with a hereditary cancer syndrome like Lynch Syndrome, BRCA1 or BRCA2 alteration can affect many different aspects of life. It means living with an increased risk of cancer and information that may also be relevant to other members of your family. This project 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 experiences of South Asian communities have not previously been explored in this way within UK cancer genetics and hereditary cancer research.
What are you going to do?
The study involves one interview lasting up to an hour. 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.
Why is this research important?
The study aims to 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, this can contribute to a better understanding of what people living with inherited cancer risk may need from healthcare, information and support. It is important that research into hereditary cancers (e.g., Lynch syndrome or BRCA1/2 alteration) reflects the diversity of the community affected by it. Saman and the team hope eligible members will consider sharing their experiences and helping to build the evidence that can ultimately contribute to better outcomes/care.
How do I get involved?
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 voucher after completing the interview as a thank you for their time.
One to one interviews can take place face to face if the participant resides within the West Yorkshire region. Expenses will be paid to cover travel to the face to face interview. If individuals live outside the West Yorkshire region or wish to attend their one to one interview virtually, these can take place online through Microsoft Teams or by telephone.
No scientific background or prior experience is needed to take part in this opportunity.
Next steps
If you are interested in joining the focus groups or would like more information, please email Saman (ll14s8h@leeds.ac.uk) quoting the involvement reference ‘PCUK RIN Participation’.
