"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at specialist cancer helplines in the UK
This study tried to find out more about why people use cancer helplines and what they think of them.
More about this trial
Many people use helplines, but there has not been very much research looking at how and why people use them, or how well they work. Researchers would like to understand more about the role of cancer helplines and what makes them work well.
In this study, the researchers asked people who have used a specialist cancer helpline to take part in a telephone interview. The researchers spoke to patients, carers, relatives and friends of people with cancer.
Summary of results
The study team found that people think cancer helplines are important in cancer care. The helplines provide an important service for people affected by cancer to talk about their personal cancer worries.
In this small study, researchers interviewed 22 people who had cancer and 9 who were carers or family members.
The main findings were that helplines offer people
- An unscheduled and lengthy time period to talk about their worries and ask questions
- The chance to speak to someone anonymously
- A convenient service (they could call from home when it suited them best)
- Someone to talk to for anyone affected by cancer including family and friends of patients
- Reassurance, emotional support, and compassion
The researchers say that the last point is important because it shows how information seeking is closely linked with needing reassurance and feeling a connection with someone.
Other findings were that
- The way the person answering the call (call handler) communicated and showed empathy was important in terms of how successful the helpline experience was
- Callers ringing for cancer information said they wanted to speak to someone who was friendly, empathic, and who sounded caring
- Most callers reported feeling happier, relieved, and less worried after the call
The researchers also interviewed the people answering the helplines. The researchers called them call handlers. The main findings were that
- They see their main role is to give information, support and (with caution) advice
- They often feel callers expect them to be counsellors and don’t always think this is reasonable
- Sometimes callers expect helplines to offer other services
- It can be difficult to identify peoples support needs over the phone without seeing body language
- Many of the helpline call handlers said they needed more time for continued development courses and research to keep up to date with cancer policy, information and the research literature.
The researchers concluded that people use cancer helplines to get more information. And this is closely linked with their mental, emotional and social (psychosocial) support needs. The researchers say that an aim of training and development of helpline call handlers should be looking at how they can effectively deal with a caller’s emotional needs even when they are only asking for information.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Dr Geraldine Leydon
Dimbleby Cancer Care Research Fund
National Institute for Health Research (NIHR)
University of Southampton