A study looking at the experiences of people with lymphoma

Cancer type:

Blood cancers

Hodgkin lymphoma

Lymphoma

Non-Hodgkin lymphoma

Status:

Results

Phase:

Other

This was a study to learn more about what it is like to have lymphoma. By talking to people about their experiences, the researchers also hoped to understand more about the sort of information and support people needed.

The aim of the study was to get a better understanding of the things that really affected peoples’ lives when they had lymphoma, and to find out which issues were most important to them.

Summary of results

The researchers interviewed 19 men and 22 women with different types of lymphoma. Their ages ranged from 27 to 84 and the group included people who

Had recently been diagnosed with lymphoma
Were having treatment at the time
Had lymphoma that had come back
Had lived for many years after treatment

The interviews were recorded and the researchers studied them to see if there were things that came up repeatedly. They call these ‘emerging themes’.

One thing they looked at was the range of emotions that a diagnosis of lymphoma can cause. This included shock, anger and fear. They found that people were often reluctant to admit to themselves that they were ill. Some people found it difficult to deal with other people’s feelings as well as their own. And many had found it difficult to tell other people about their illness.

The researchers learnt what it was like for people having treatment for their lymphoma and how they coped with side effects. They also learnt how having lymphoma affected different aspects of people’s lives, including their work and their relationships. Many people described how they had been supported by friends and family. Some had found that patient support groups helped them, others had not.

The findings from this study have been used as a basis for the lymphoma section of a website called Healthtalkonline.org. On this site, you can watch or listen to people talking about their experience of having a range of medical conditions, including many types of cancer.

The section on lymphoma is arranged in different topics, based on the emerging themes from this study. The list of 29 topics includes symptoms, chemotherapy, dealing with health professionals, feelings during treatment, recovery, remission and follow up.

We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.