Living with Neurofibromatosis Type 1: An Anthropological Study

Naomi’s an anthropologist, which means she studies cultures by hearing about them first-hand, in people’s own words. Growing up in both America and Britain, Naomi learned how important culture is for shaping people’s everyday lives, especially when it comes to health. Her field, medical anthropology, explores how people’s backgrounds influence how they experience health conditions. Getting to know people in-depth, whether in a single interview, or even over the course of several months, is what makes anthropology different to other kinds of research. The more you can talk about your everyday life (including your values, opinions, experiences, and aspirations), the better Naomi’s research will be.

This research is important because gathering and sharing NF1 stories from diverse perspective can help patients and doctors alike. Having accessible accounts from around the world of how people live and thrive with NF1 can inform and inspire people living with the condition. Data from this research can also help train healthcare providers to become more culturally sensitive. Moreover, having detailed accounts of the variety of NF1 experiences can inform policymakers, such as legislators and bioethicists. So while taking part in this research is unpaid, it is still an exciting and rewarding opportunity to share your story. You can be from any background to take part! You just have to be over 16, live in the UK, and be willing to chat about your experiences with NF1.

What does taking part in this research involve?

Naomi is conducting casual, one-on-one interviews over Zoom. Interviews start with some prepared questions, followed by friendly, unstructured conversations – giving you the freedom to share your story in whatever way you feel is best. No identifying information (such as your name) will be shared in research outputs.

Interviews take about 1 hour. Questions will cover your NF1 symptoms and diagnosis, your sociocultural background, your experience of lockdown during COVID-19, any support you may receive from friends or family, and your experiences at work, school, or home.

One-off interviews are great and can help this project cover a variety of perspectives. But, if you have the time, it would also be great to consider taking part in multiple interviews with Naomi. Of course, there is no pressure to take part in multiple interviews! You can decide after your first interview if you’d like to take part in more. Participants are also free to withdraw from the research at any time without giving reason.

We in the head office at Nerve Tumours UK are supporting Naomi all the way throughout her research. The head office will take part in the interviewing process as well as some of our NF specialist nurses and medics to map out and understand how the situation for those affected with Neurofibromatosis is organised and hopefully will learn and apply findings to our service improvement.

I want to take part/I want to learn more!

Great! To schedule an interview at your convenience, follow the link below.

Please include times and dates when you might be available. You can schedule an interview for any time, including weekends and evenings.

If you have any questions, you can e-mail Naomi directly at naomi.marshall@anthro.ox.ac.uk 

Ethics approval code: SAME_C1A_20_008 University of Oxford

Nerve Tumours UK is not responsible for any data collection or content of the project.