When cancer hooks on
Visible small things, such as being able to keep your clothing hook at the pre-school, may play a large role for combating feelings of alienation among small children with cancer. Laura Darcy, whose doctoral thesis highlights the everyday life of children with cancer claims that medical staff and educationalists have a lot to learn from the stories of children.
Laura Darcy is a paediatric nurse with a Master's degree in public health sciences. For four years she has been a postgraduate student at Jönköping University and the University of Borås. In the spring her thesis entitled “The everyday life of the young child with cancer” will be presented.
Over three years Laura has met thirteen children, all of whom have been diagnosed with cancer. The purpose is to describe how the children live with their illness and how they view their life. At the start of the study, the youngest were only aged one and the oldest had turned six. Now, three years later, they have been through both important development phases and aggressive treatments.
“During the first meeting, when they had recently been diagnosed, these children were very traumatised. They described themselves as outsiders. And many of them felt a strong sense of alienation,” says Laura.
The longing for everyday life
That the pre-school means a lot for the sense of belonging became clear during the first meetings. Several of the children said that they wanted to keep their clothing hook with their name and photo, and that they hoped that the staff would continue to call their name during assembly.
“Practical things which perhaps seem unimportant for us adults, are extremely important for these children. I recently met a girl who had returned to pre-school and discovered that they had forgotten to invite her for the summer break. She was completely devastated.”
Roughly one year after the cancer diagnosis, the children had started to gain a new sort of normality in their everyday life. Laura claims that children have a strong longing for a functioning everyday life, and that they often participate actively in their own treatment.
“I have met three-four year olds who actually take their own tests. Under the supervision of a competent nurse of course. When they themselves understand what should be done and why, the process continues much more smoothly. Paediatric nurses have an extremely important role to play in this.”
Sensitivity is important
Staff who take care of children with cancer need to keep up when the needs change. Laura Darcy's study provides pointers on the support which is required, at what time. She hopes that the thesis will have practical usage. And that more people become attentive to the everyday lives of small children.
“In care we are so focused on saving lives, but we should not forget the children's need for a functioning everyday life. In the morning I thought of the notion that you should live a life, not win a war. These children need to do both parts.”
Text: Kristina Modigh
Photo: Peter Andersson