RecruitingOBSERVATIONAL

Palliative Care and Oncology Survey on Terminology

This study is looking into what terms like 'cancer survivor' mean to people actually living with cancer. Many different understandings exist, and these terms might not always feel right for everyone. We're asking people who are currently having cancer treatment, or those receiving palliative care, how they feel about these words. Your opinions are very important because they can help doctors and nurses understand how best to talk about and support people with cancer. The study involves completing a simple survey that takes less than 30 minutes. It's hoped that what we learn will improve how care services are designed and delivered in the future.

At a glance

Status

Recruiting

Sponsor

Our Lady's Hospice and Care Services

Enrolment target

1,532

Start

03 Oct 2023

Estimated completion

01 Oct 2025

Cancer

What is this study about?

Imagine you're on a journey. Sometimes the words people use to describe that journey, or you, don't quite fit. For people living with cancer, words like 'cancer survivor' are often used, but what does that really mean? Some people feel it describes them perfectly from the moment they're diagnosed and throughout their lives, whether they're still having treatment or are cancer-free. Others might feel these terms don't really capture their experience, especially if they are living with advanced cancer or receiving special care to manage their symptoms and improve their quality of life, known as palliative care.

This study is designed to listen to your voice. It's a simple, international survey that aims to hear from people like you across the UK and Ireland. We particularly want to understand the views of two groups: those who are currently having cancer treatments and those who are receiving palliative care. Your opinions are incredibly valuable because they can help doctors, nurses, and care providers understand how the words they use affect you.

Ultimately, by understanding what terms feel right and helpful to you, we can make sure that healthcare services are delivered in a way that respects and supports everyone living with cancer. It's about making sure the language used truly reflects people's experiences and helps, rather than hinders, their care.

Key takeaways

Share your views on cancer terminology.
Help improve future cancer care and communication.
Quick and easy: a single survey taking under 30 minutes.
Your privacy is protected.
No medical treatments or follow-up involved.

Who may be eligible?

This study is looking for adults aged 18 or over who have been diagnosed with cancer. We are especially interested in hearing from two main groups of people.

The first group includes people who have cancer and are currently receiving palliative care. This could be care you receive in a hospital, at home, or through a hospice. You need to be able to speak and read English well enough to understand and fill out a survey.

The second group includes people who have cancer and are currently undergoing any type of anti-cancer treatment. Similar to the first group, you need to be at least 18 years old and able to speak and read English to complete the survey. If you're unable to give your consent or complete a survey, unfortunately, you wouldn't be able to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have a cancer diagnosis?
Are you currently receiving palliative care OR active cancer treatment?
Can you speak and read English well enough to complete a survey?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would be asked to complete a survey during a single visit. This visit could be at a hospital, a hospice, or in your own home, depending on where you receive your care. The survey will ask you a series of questions about your thoughts and feelings regarding the words used to describe people with cancer. The whole process, including completing the survey, should take less than 30 minutes of your time. There are no medications or follow-up appointments involved after you complete the survey.

Potential risks and benefits

Taking part in this study is very low risk. The main benefit is that your opinions will help healthcare professionals understand how to improve communication and care for people with cancer. There are no direct medical benefits to you personally. You can choose to withdraw from the study at any time without giving a reason, and this will not affect your medical care in any way.

Locations (3)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

St Vincent's University Hospital
Verified postcode
Dublin, Ireland· Recruiting
Our Lady's Hospice & Care Services
Verified postcode
Dublin, Ireland· Recruiting
Royal Surrey County Hospital
Verified postcode
Guildford, United Kingdom· Not yet recruiting

Common questions

What is palliative care?

Palliative care is special care to improve the quality of life for people with serious illnesses, focusing on comfort and support, not just trying to cure the illness.

What does 'cancer survivor' mean?

It's a term often used to describe anyone who has been diagnosed with cancer, from the time of diagnosis throughout their lives, whether they are still undergoing treatment or are cancer-free.

How long will the survey take?

The survey itself, and the entire visit, should take less than 30 minutes of your time.

Do I need to go to a clinic many times?

No, this study only requires you to complete the survey during one single visit.

Can I stop taking part if I change my mind?

Yes, you are completely free to withdraw from the study at any point without it affecting your medical care.

How to find out more

Amy GS Taylor, MBChB MRCP

ataylor@olh.ie 4986243 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.