Social networks are important for people diagnosed with acute leukaemia. A new qualitative study shows that people with cancer especially need to talk to others who have been in the same situation.
Being diagnosed with acute leukaemia upends people’s lives.
They need solid social networks at home, in the healthcare system and among other people in the same situation.
A new Danish study has investigated how people experience receiving a diagnosis of acute leukaemia and found that people with cancer benefit from talking to others in the same situation.
“This group is special compared with other people with cancer, because the diagnosis is often so sudden. They may feel that they have persistent flu, but a few days later they find out they have a very serious type of cancer. This makes it interesting to determine how they cope with the initial stages of their disease trajectory. It may also identify some aspects of the healthcare system that need to pay extra attention and help them cope with their treatment,” explains the researcher behind the study, Kristina Nørskov, PhD student and nurse, Department of Haematology, Rigshospitalet, Copenhagen.
The study was recently published in the European Journal of Oncology Nursing.
Cancer makes people experience loss of control
Kristina Nørskov interviewed 18 people with cancer from Rigshospitalet, Herlev & Gentofte Hospital and Odense University Hospital 4–16 weeks after they were diagnosed with acute leukaemia.
The interviews focused specifically on how they experienced being diagnosed with cancer and the support they felt they needed.
Based on the answers, Kristina Nørskov summarized several features the people with cancer had in common.
They said that they felt a tremendous loss of autonomy after being diagnosed with cancer.
“We need to be aware of this in our clinical work. Of course, we are already doing much to involve these people in their treatment so that they can feel that they have a say in the process, but we can do more. The hospitals are already focusing strongly on this,” says Kristina Nørskov.
People with cancer need three types of social networks
Another common theme in Kristina Nørskov’s interviews with people with cancer was the need for social networks.
The people with cancer said that they needed diverse kinds of social support from three social networks: the home, healthcare professionals and other people with cancer.
People with cancer expressed urgent need for help from the home social network with friends and family to get practical tasks organized. This could include helping to fetch children or to shop and cook – that is, making everyday life function in the new reality.
“Managing the simple tasks of daily living is important for them, because otherwise they may have difficulty in implementing the treatment,” explains Kristina Nørskov.
Doctors and nurses are sometimes too busy to meet social needs
People with cancer needed different kinds of support from the healthcare social network.
They wanted practical support related to treatment and discussions about being ill.
Unfortunately, Kristina Nørskov's research shows that this social network is being given less priority.
One reason is that doctors and nurses are under pressure and have less time for each individual, but the treatment has also become more outpatient, and people with cancer are therefore increasingly more at home rather than being in hospital.
“The positive aspect is that being more at home has many benefits. However, providing each individual the information and support they need can be a challenge. We are already aware of this problem,” says Kristina Nørskov.
Newly diagnosed people experience a need to talk with others in the same situation
The third social network, which for many was actually the most important, is the social network with other people in the same situation.
The people with cancer expressed a great need to talk to other people in the same situation, who could much better understand what having cancer is like. Often, neither their friends, their family nor health professionals can do this.
Kristina Nørskov says that these people consider social support from other people with the same type of cancer to be a definite lifeline when starting treatment for cancer.
“This dominated their experience of being diagnosed with cancer and suggests that extra effort should be made to establish social networks between people with cancer so that they can talk to others in the same situation about everything from how they feel physically to how others have tackled informing their family about the disease. Other people may be the “light in the dark”, making people confident that they can make it through the process,” says Kristina Nørskov.
More experienced ambassadors needed
Kristina Nørskov thinks that her study indicates the need for a more systematic assessment of people’s social networks when they are diagnosed with cancer.
If they do not have a strong home social network and do not naturally establish a social network with other people with cancer, they probably have an additional social need in connection with their cancer diagnosis.
This is an obvious opportunity to create support programmes in which people with cancer who have more experience mentor the newly diagnosed people during the first stage.
This is also the topic of Kristina Nørskov’s PhD thesis. Her overall research goal is precisely to examine the importance of these ambassadors.
“We would like to know more about how this affects both experienced and newly diagnosed people with cancer and whether such an ambassador programme can be established. We are now investigating this idea and can already see that the people with cancer want and would appreciate this,” says Kristina Nørskov.
“Patients’ experiences and social support needs following the diagnosis and initial treatment of acute leukemia – a qualitative study” has been published in the European Journal of Oncology Nursing. In 2017, the Novo Nordisk Foundation awarded Kristina Nørskov a grant for the project Patient Ambassador Support for Newly Diagnosed Patients with Acute Leukaemia during Treatment.