Background: Although the importance of appropriate illness understanding for children’s wellbeing is well established, medical information is rarely directed towards children during medical consultations. And although the psychosocial burden of children with chronic diseases is reported to be high, psychosocial topics are frequently avoided in medical dialogues with children. Few have studied how children express their negative illness related experiences and how adults respond. Computer assisted, interactive tailored patient assessments (ITPA) have been found to improve children’s report of sensitive topics. However, we do not know how use of “Sisom”, an ITPA developed to aid child report of illness related problems, may change the patient-provider communication in a pediatric setting.
Aim: To investigate the communication of illness related experiences by chronically ill children aged six to 13 years and to investigate the effect of use of “Sisom” on patient-provider communication. More specific aims were:
- To describe children’s verbal expressions and mental representations of physical symptoms.
- To describe how children communicate negative emotions during medical consultations.
- To evaluate the applicability of “the Verona Network Definitions of Emotional Sequences” (VR-CoDES) on a pediatric data set.
- To describe HCP and parents responses to children’s communication of negative emotion and analyze the association with child age, gender, anxiety and verbal participation.
- To investigate the effect of “Sisom” on children’s involvement in task-oriented communication and problem report during pediatric consultations.
Method: Three exploratory studies were conducted. In study 1 semi structured interviews and content analysis was applied to explore the communication and representations of physical symptoms by children with cancer and their healthy peers. In study 2 communication analysis was applied to videotaped oncology consultations in order to describe how children communicate negative emotions in this setting. Study 3 was conducted in a cardiology setting and divided into two sub studies. In study 3.1 communication analysis was applied to videotaped consultations to quantitatively describe HCP and parents responses to children’s expression of negative emotion. Study 3.2 was designed as a case-control study and communication analysis applied to investigate the effect of “Sisom” on child involvement and problem report during the consultations.
Results: Children in Study 1 used verbal expressions that specified physical symptoms, but used few medical terms. Their symptom representations frequently involved a feeling of personal responsibility. Children with cancer showed a greater variation in symptom terms and mental representations of symptoms, but little confidence in treatment possibilities. Study 2 found children to express negative emotion during medical consultations, but mainly as subtle verbal or nonverbal cues. Explicit concerns expressed involved the conduction of medical procedures. VR-CoDES-CC was found to be a reliable tool. Study 3 .1 revealed that children express negative emotions even when no invasive procedures are conducted. Young, verbally active, and trait anxious children most frequently expressed negative emotions. However, HCP’s and parents rarely explored and frequently ignored the negative emotions expressed. Study 3.2 showed that use of “Sisom” increased child-oriented communication about medical topics and increased the amount of problems addressed during medical consultations.
Conclusion: Children aged six to 13 are able to label and describe physical symptoms and should be involved in medical dialogues about their disease. The experience of a chronic disease may affect children’s representations of physical symptoms in less expedient ways. As use of “Sisom” increases the amount of problems addressed and children’s involvement in medical dialogues, HCP’s opportunity of insight into children’s symptom illness related experiences is magnified. However, children should not be expected to explicitly state their negative emotions during medical consultations. Thus, HCP’s should pay attention to children’s subtle communication of negative emotions and try to counteract the observed tendency to ignore their expressions. As use of “Sisom” only increased child-oriented communication with a medical content, future implementations in a clinical setting should include efforts to increase HCP’s engagement in dialogues about the psychosocial aspects of living with a chronic disease in childhood.