Survivors’ experience of a childhood with cancer

The study is based on interviews with adults who had acute lymphoblastic leukaemia (ALL) as children and who were treated with stem cell transplantation, among other things. What is unique about the study is that it is a long-term follow-up only with people who have had this specific diagnosis and treatment. Further back in time, very few children with ALL reached adulthood, but with developed treatment methods, the possibility of survival has increased significantly.

The experience of the disease and the treatment affected the people emotionally as children, and in many cases still does today, according to Susann Arvidsson, Senior Lecturer in Nursing at Halmstad University, who is behind the research. In the interviews, the people highlight the feeling of being different as a child.

“Both the disease and the treatment meant bodily changes, such as halted growth and weight changes. They felt lonely even though they had family and other people around them. As children, they wanted so badly to be like everyone else their age”, says Susann Arvidsson.

Classmates and teachers

The children struggled to keep up with school and not have to retake a class because they had been away a lot. Some described great support from classmates and teachers. Others talked about the opposite, ending up utside and looking different, which meant that several were bullied and received little or no support from the teachers.

The interviewees also highlight how important it was that they felt safe during and after the treatment.

“They really felt that the staff had a commitment, and they were so grateful for the emotional support they received”, says Susann Arvidsson.

Meeting others who had gone through the same treatment, and who understood the child’s thoughts and feelings, was also very important.

Feelings of guilt

At the same time, as children, they had a lot of guilt.

“Everyone felt guilty about how the disease had affected the family and what the family given up during the toughest period. Some parents became closer, some drifted apart and difficulties such as addiction and other things occurred. The sick children felt guilty towards the siblings, and several were told by the siblings that it was the sick child’s fault that the parents separated”, says Susann Arvidsson.

The interviewees also highlight positive memories.

“Among other things, the Swedish Childhood Cancer Fund* used to organise activities both at the clinic and outside, and many people talked about fun experiences and that the family got a chance to get close to each other in a different way.”

Early support

How would the interviewees have liked to be treated as children?

“The answers are very much about getting support early, talking to people who really know what the treatment entails. Those who have attended follow-up clinics for adults after childhood cancer are very satisfied”, says Susann Arvidsson.

There are a few follow-up clinics for adults after childhood cancer in Sweden and these, according to Susann Arvidsson, are very important for people who have been treated for acute lymphoblastic leukaemia with stem cell transplantation.

“Even though the people have been declared cured, there are many late complications caused by the disease and the treatment, both physical, mental and social. The survivors need support. It does not work to treat the disease only for a limited time. One person said: “Society and healthcare do not work together, they work according to two different directives. One side will try to save lives and the other will try to take care of what comes out of the hospitals. But society doesn’t take care of what comes from the hospital.”

*Barncancerfonden in Swedish

Text: Kristina Rörstöm

Photo: Istock