If you are interested in being involved please contact me.
About the Research Project
Cancer of unknown primary is diagnosed when cancer has spread within the body and despite investigation, the original cancer is not found. It is typically diagnosed late and can be difficult to treat. Whilst there is limited research into the experiences of a cancer of unknown primary diagnosis on the individual, there is less known about the effect it has on the person’s family. My research aims to fill some of that knowledge gap on the impact a diagnosis specifically has on family members. In this case the term family is used to mean people with close relationship which includes chosen family.
The Interview
My research will be interviewing those with direct experiences. Interviews will take place either by video call or telephone, whichever is most convenient. It will involve an interview of about an hour where I ask questions to gain an understanding of common experiences and emotional effects of a family member having cancer of unknown primary. This is not intended to be distressing and interviews can be stopped at any time.
Who am I looking for?
Participants are sought who are over the age of 18, able to give consent, and have a family member diagnosed with cancer of unknown primary. The word ‘family’ is used in its broadest sense, by this I mean to include anyone with a significant relationship to the person with cancer of unknown primary, including chosen family as well as blood relatives. I aim to interview 15 participants. Participants who have had a bereavement in the previous 3 months are respectfully excluded from this project. I will also try to avoid interviewing on any dates which are particularly upsetting.
What will you do with the interview recording and the information you gather?
Knowing what will happen to your personal information and the experiences you have shared is important. A more detailed breakdown of the rules and regulations surrounding the holding and collecting academic data will be shared with those who wish to participate. There are some key points which may be reassuring to know at this point.
Results from the information collected will initially be published as part of a PhD thesis. The intention is that the results of this research will then be published in medical journals and presented to the wider medical audience to increase knowledge of the ongoing legacy of cancer of unknown primary.
All data gathered is anonymised. This means pseudo names will be used during data analysis and in reporting and dates, staff names, hospitals and any identifiable information will be changed. Data collected from the interviews will be stored in accordance with the Data Protection Act (2018). Ethical approval for this research project, which includes the more detailed data protection protocols has been agreed by Faculty of Health and Medicine Research Ethics Committee (FHMREC) Lancaster University.
If you decide you would like to be involved in the research, you have the option to withdraw from the interview at any time by emailing the researcher. Interviews data can be withdrawn up to 3 weeks after interview, right up until data analysis takes place.
The next step.
If you would like to be involved then the next step is to complete the contact me page and I will get in touch with by your preferred method, either telephone or email. I will be able to answer any questions and can arrange the best way for us to talk, whether that is by video call or telephone.