The health of young children with cancer

“It's feels incredibly good, and nice to get confirmation for your research in this way,” says Laura Darcy and puts the focus on the child.

In her research Laura Darcy monitors small children aged between 1 and 6 years, over a three year period. The children have the same thing in common in that they have been diagnosed with cancer, although the forms of cancer differ.

“The most common form of cancer among such small children is leukaemia” says Laura Darcy who is a paediatric nurse with a Master's in Public Health Sciences, and since 2011 also a PhD student at the School of Health Sciences in Jönköping and the University of Borås, Department of Health Sciences.

Over a three year period, Laura (pictured) meets children and their families at home or in the hospital on six occasions. The children talk about their daily lives, how things are, how they feel and how they perceive living with their illness.

A three year old has a lot to talk about when it comes to care

“The goal of my research is to develop the child's experience of living an everyday life with cancer. If we are to provide qualified care, we need to know what the children are thinking. Today we base our care on what the parents or carers believe, but we have not asked the children themselves before,” Laura Darcy explains and says that even young children have a lot of thoughts and reflections to share.

“I mean that even children from the age of three have a lot to talk about, I can see this from the study. The children explain their longing to meet other children and how they want to be treated in hospital. A good care provider is a person who is courteous, who sees the child, who invites the child to participate in its care, who asks permission before doing things with the child, provides information and gives them access to their parents as protectors and not merely as assistant carers,” says Laura Darcy.

Moreover, what Laura so far sees in her research is that the staff at the hospital have a significant role to play in retaining contact with the child's contact network outside of its care. One wish that children express is being able to keeping in touch with their preschools.

“Many children report feeling very alone and left out, as they are often away from their preschool for a long time. Something that often comes up is that the children want to retain their coat hook with their pictures above at their preschool, as a way of feeling they are still there although not physically. It would be wonderful if health care could have continued contact with the municipal childcare services,” says Laura.

Is it ethical to conduct research on children?

One question she often gets is whether it is really ethical to conduct research on children.

“I have come to the conclusion that children also have the right to be researched,” she says. The research of children is a way of making a small child visible.

With the help of funds from the Children's Cancer Foundation, Laura Darcy will be conducting the final round of interviews in the spring. The material will then be processed and the dissertation completed. Based on the collected material she has authored two scientific papers to date. Two more articles are to be printed before the dissertation is complete.

“It is a privilege to be allowed to be a part of these children's lives,” Laura Darcy concludes.

Copy: Eva-Lotta Andersson

Portrait photo: Jan-Erik Andersson

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Footnote: Laura Darcy conducts her research at the School of Health Sciences in Jönköping and the School of Health Sciences at the University of Borås. The main supervisor is Prof. Karin Enskär at the School of Health Sciences in Jönköping. Laura Darcy is one of the researchers at the Jönköping-based research environment Child.