Sesiones

How the cancer diagnoses is communicated to children depends a lot on the age of the child as well as the type of cancer (D. M. Wojcik, personal communication, 21st October, 2014). As a mother of a child who had cancer at the age of one, Berland told that her son did not understand anything of the diagnosis (V. F. Berland, personal communication, 23rd October, 2014). When the children are old enough to understand, however, Wojcik emphasized that it is important that the children are enlightened about the diagnoses (D. M. Wojcik, personal communication, 21st October, 2014).

Who is conveying the diagnoses to the children do vary depending on the parents wishes. Some parents want a physician to tell their children whilst other parents want to convey it themselves after a conversation with a physician. Bøe expressed that the communication method is direct as the word cancer is used (M. Bøe, personal communication, 22nd October, 2014).

4.3.1.1 Essential Information

30 years ago children with cancer were not informed about their condition. Straume herself had a cousin who died of cancer without him getting any information about the disease from the hospital. As of that time society has come to the understanding that information helps. Openness has been more valued and knowledge about one’s own condition is obvious today (M. Straume, personal communication, 10th November, 2014).

All of the interviewees agreed that the children should learn about the diagnosis, and should receive correct information. According to Wojcik this information can only be given to the children if their parents agree, which they mostly do (D. M. Wojcik, personal communication, 21st October, 2014). Straume did not agree on it being possible to hide this information for the patients, especially if they were to spend a lot of time at the hospital among other cancer patients and medical staff who then had to keep track of with whom one could use the word cancer and not (M. Straume, personal communication, 10th November, 2014). If children do not get this information, they will likely imagine a lot of things. In todays society, with accessible information, they may find their diagnoses through different information channels (D. M. Wojcik, personal communication, 21st October, 2014).

Further detailed information given depends on the child. If the child is interested in the long term perspective, information about treatment and side effects are presented. These conversations always end with optimistic information like prognosis since many types of pediatric cancer have relatively good prognoses. For cancer types with less good prognoses the focus lies on communicating hope and the possibility of defeating it, but at the same time communicating that it requires a tough treatment and a lot of time spent at the hospital (D. M. Wojcik, personal communication, 21st October, 2014).

Bøe also emphasized the importance of conveying that cancer occurs randomly, explain- ing that it is an error that occurs in the body, but we do not know why. This information is important because parents and children sometimes can feel guilty thinking the disease has occurred due to something they have done or have not done (M. Bøe, personal communication, 22nd October, 2014).

4.3.1.2 Conveyance

From a motherly perspective Berland thinks honesty in the information given is the most important element; explaining everything as well as possible. She stated that honesty also entails being honest about the unpleasant factors like pain, as well as factors we do not know (V. F. Berland, personal communication, 23rd October, 2014) - e.g. how the outcome could be.

Straume also empathized that the information should be honest, as well as concrete and simple. By simple she referred to age specific, appropriate to the child’s level of development. With the goal being that the information should make the children feel safer, the information should also be truthful and gentle, conveyed with hope, and not intimidating. It is therefore critical to explain that there are many available treatments for the illness and that some of them can cause side effects, but emphasize that this is what it takes to become healthy. When children receive this information it is very important that they are accompanied by their parents; parents should always know as much about the illness as their children. In this way children can confront their parents if they want to discuss it or have more questions after receiving the information. This also applies to other information sources like books and digital storytelling (M. Straume, personal communication, 10th November, 2014).

Metaphors At Haukeland University Hospital, Wojcik stated that metaphors rarely are used in the process of conveying cancer diagnoses to children. Wojcik herself is not using any metaphors, she rather adjusts the language to the child’s age (D. M. Wojcik, personal communication, 21st October, 2014).

Both Wojcik and Bøe spoke about some magnetic images (color images in hard plastic), available at Haukeland University Hospital, which are not being used. They are, however, used at other children’s hospitals which are treating cancer. The images depict different types of cells and medicines. Cytostatics are, for example, represented as golden drops whilst antibiotics are depicted as stars. As cancer can be perceived as a vague theme Bøe thought metaphors like these should be used more often, even with older children (M. Bøe, personal communication, 22nd October, 2014).

Upon receiving the diagnosis the book Kjemomannen Kasper (see Section 2.5.1) is used a lot, both for children with cancer and for child relatives (M. Straume, personal com- munication, 10th November, 2014). This book explains cancer and chemotherapy in a simple and child friendly manner. It uses non intimidating metaphors to help the children understand a topic that is very abstract and difficult to understand. In her work as psychologist Straume uses a lot of metaphors with both children and adults (M. Straume, personal communication, 10th November, 2014). Bøe also uses this book in her work with the children after they have recieved the diagnosis. In addition she uses metaphores like angry cells when talking with the youngest children (M. Bøe, personal communication, 22nd October, 2014).