When children lack information, they make up stories by adding up their own guesses. Their imagination can run wild: all elephants are pink, right? This kind of reasoning is undesirable when trying to explain a rare disorder of a sister or brother. Guesswork may result in incorrect illness explanations and might cause related miscommunication or behavioral problems. When we learn more about how siblings describe illnesses, we might be able to appropriately assist family counselors and parents.
The right to information
Torun Vatne and colleagues  from the Frambu Resource Centre for Rare Disorders  in Siggerund, Norway, explain that as next of kin, children are entitled by Norwegian law to tailored information about the disorder of a parent. However, this law does not apply to siblings. The information they receive is dependent upon whether health care personnel have time to talk with them and think that informing siblings is an important task (or their task). Moreover, since parents have to cope with changing circumstances, they also might not be able to invest time and effort in communicating information about a disorder with their other children. Focusing on how to cope with the rare disorder of a child is a more than logical choice.
Guesswork might lead to misconceptions and/or feelings of uncertainty
How do siblings describe the disorder of another sibling? By gaining more insight into this process, parents and counselors should be able to learn more about this information gap and the ways known to bridge it. When children lack information and start guessing, the resulting illness representation may not be in accord with medical facts, as Vatne et al. explain. Thus, it was expected that siblings of children with rare disorders would have misconceptions and/or feel uncertain about the diagnosis of their sibling.
Detailed video analysis sheds light on counsel sessions
Vatne’s study included interviews with 56 children between the ages of 6 and 17. The researchers recorded family support sessions. They positioned a small digital video camera in the room at an angle that captured the faces of the whole group. After recording, the researchers used The Observer XT to create a detailed content analysis. Children’s statements about the disorder (turns) were sorted into five categories: cause, cure, timeline, identity, and consequences. The researchers categorized the statements as medically misunderstood or uncertain. These statements were further analyzed to explore trends. Vatne’s study provided detailed insight into information processes. Furthermore, it was found that approximately 16% of the children’s turns involved misconceptions or uncertainty about the disorder, most commonly about the identity or cause of the disorder. Misconceptions and uncertainties were unrelated to child age or the type of disorder.
Misconceptions and uncertainty are caused by many factors. In this study, misconceptions seemed to originate from information available in everyday family life, generalization of lay beliefs, or through difficulties understanding abstract medical concepts. Among older children, Vatne et al. explain, it may be the case that information is only given one time and early in childhood but not updated as the child matures. Practical recommendations made by the researchers include the comment that it is very important to share correct information with siblings. Parents and counselors can play their part. It is also important to remember that children do not always understand the terms that are commonly used in medical encounters. Overall, Vatne et al. aided in gaining more insight into communication patterns and knowledge sharing on the topic of a sibling with a rare disorder. In their day-to-day practices, counselors and parents can now be aware of the information gap and consider other approaches to necessary conversations.
- Vatne, T.M.; Østborg Helmen, I.; Bahr, D.; Kanavin, Ø.; Nyhus, L. (2015). “She Came out of mum’s Tummy the Wrong way” (Mis) Conceptions Among Siblings of Children with Rare Disorders, Journal of Genetic Counseling, 24, 247–258.