Cancer information your way: get what you need to make your decisions
Research type
Research Study
Full title
Cancer information your way: get what you need to make your decisions - a qualitative study of decision making by patients with lower health literacy receiving care for incurable cancer
IRAS ID
286618
Contact name
Chloe E Holden
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 9 months, 1 days
Research summary
People diagnosed with cancer may face many difficult decisions regarding their care and preferences. This may be particularly challenging when the cancer cannot be cured.
Decisions might include whether to go ahead with palliative treatments including radiotherapy, chemotherapy or immunotherapy. Patients, their families and their healthcare team must balance the possible benefits of better symptom control or prolonged life against the possible risks of side effects. These side effects may be life threatening, and treatment will often mean lots of hospital visits.
There may be decisions about involving specialist palliative care teams to help with symptoms and to make plans in preparation for the end of life. As the disease progresses, patients will be involved in discussions around cardiopulmonary resuscitation (CPR).
It is therefore hugely important that patients have the information they need so that they can be involved in these decisions and in their care.
We know that we can do more to support people to get the information they need in a way that they can understand. We want to hear from patients who might have found that the information they were given wasn't easy to understand. We also want to talk to people who haven't been able to get involved in their care as much as they would have liked.
We hope to speak to patients in the NHS who have been diagnosed with cancer that cannot be cured. Patients will be identified by teams in a hospital in the south of England. We will do 1 interview with each participant by video or telephone, so that people do not need to leave home. We want to learn from these experiences so that we can improve the way we give information to patients and support them to become involved in their care.
REC name
London - Riverside Research Ethics Committee
REC reference
20/PR/0478
Date of REC Opinion
28 Sep 2020
REC opinion
Favourable Opinion