GRANT. To contribute to a better existence for children with cancer. This is a vision for care researcher Stefan Nilsson, who now receives a four-year research fellowship from the Swedish Childhood Cancer Foundation.
Stefan Nilsson’s research deals with providing support for children undergoing cancer treatment. The project explores how fears and discomfort can be reduced for children undergoing oncological treatment, via communication and supportive care measures
“Our group wants to strengthen research relating to care and explore what importance how one is received, how communication is undertaken, and how medical care is provided has, in order to be able to cure and alleviate
the situation when children have cancer. We believe proper care can increase the child’s sense of security and improve their nutritional situation, so that the child can handle their situation better, both in the short and also long term,” comments Stefan Nilsson, who is Associate Professor of Health Sciences at the Sahlgrenska Academy Institute of Health and Care Sciences.
Children are not small adults
The research program has two specific objectives. The first objective is to develop and evaluate an intervention for communication support in the form of images, in connection with medical exams and treatments.
“Children with cancer undergo many medical examinations and treatments, and it is not uncommon for them to experience fear in connection with these procedures. One method of reducing fear is to give the child a sense of control over the situation and also a co-determination role whenever possible,” notes Stefan Nilsson.
The second objective is to describe children and their parents/guardians’ experiences with the situation surrounding meals and, based on this, develop targeted supportive care efforts for children receiving a gastrostomy port in connection with oncological treatment.
“Children receiving intensive oncological treatment often receive a gastrostomy port so as to facilitate the supply of nutrition. There is some clinical experience, but there are almost no studies that have examined this from a care perspective,” observes Stefan Nilsson, who notes that there is a big difference between children and adults when it comes to cancer treatment:
“Children are not small adults. What an adult can experience as something that can be done can be completely unthinkable for a child. One example of this is are various types of needle sticks that many children may feel a fear of undergoing. In particular, the care must be adapted to child’s physical, mental and social development.
Child-centered communication
In order to respond to and support a child, care providers need to adopt a child-centered approach, where the child’s cognitive development is taken into account and where the child’s own opinion should take a prominent place in the decision-making.
“It is rarely the case that all decisions should be made by the child, or that all decisions should be made by an adult. Most often, the situation is somewhere in-between these two extremes. A skilled caregiver has the ability to analyze the situation and can move between these two positions, in a professional manner. Child-centered communication means just that; that decision-making in communication switches between the child and the adult, based on what is to be decided,” explains Stefan Nilsson.
In recent years, some research has been published based on the child’s perspective, but most often the research is still exploring how adults think children experience the situation. There is research showing that it can be difficult for adults to assess the pain and taste experiences that children experience. Therefore it is important to find reliable methods for learning about and assessing children’s own experiences,” in the view of Stefan Nilsson, who further comments:
“It is important to document children’s experiences as reliably as possible, and this can be a challenge due to that children are in different stages of development. Considering this, it may be useful to collect data in various different ways, and then using triangulation, seek to obtain a clearer picture of the situation. We will use mixed methods where children and parents can both express how they experience events and also share their experiences.”
Stefan Nilsson’s research team has broad expertise in the fields of childhood cancer, nutrition, pain, fear and the care environment, and is composed of doctors, nurses and speech therapists. As the evidence suggests that there is value in collecting data on the same individuals over an extended period of time, the research team plans to repeat the data collection on several occasions in order to get a better understanding of the situation of children. The collection of data will primarily take place at the children’s cancer center at the Drottning Silvia barn- och ungdomssjukhus/Children’s and Youth Hospital in Gothenburg.
