Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care : Quasiexperimental Study

Background: There is a shortage of electronic Health (eHealth) services for children 6-12 years old, which promotes their participation in healthcare. Children with long-term diseases want to be more involved in their healthcare, and have the right to receive information, to be listened to, to express their opinions and to participate in decision-making in healthcare. Objective: The aim of this study was to investigate children’s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Method: A quasi-experimental design with mixed methods was used. Twenty-seven appointments with pediatricians for 14 children aged 6-12 years (mean 8.3) with a cancer diagnosis were filmed and analyzed. The intervention group consisted of children who used an eHealth service prior their appointments with pediatricians at a pediatric oncology clinic and the control group consisted of children during their appointments with pediatricians at four other pediatric oncology clinics. The data from the observations from the films were analyzed with quantitative and qualitative analysis. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, of the proportion of the appointment time that the children were talking and their levels of participation. The qualitative analysis included directed content analysis included observations of the video films to assess the children´s levels of participation manifested themselves. Results: A greater proportion of what the pediatrician said in the intervention group was addressed to the child than occurred in the control group, but the proportion of the appointment time the children talked was almost the same for both the intervention and the control groups. The levels of participation corresponded to the first three levels of Shier´s participation model: Children were listened to, Children were supported to express their views and Children´s views were taken into account. The results showed an increased level of the children´s participation in the intervention group. Several codes were found about information, which did not fit into any of the existing categories, and a new category was thus formed: Children received information. Situations were also identified where children were actively excluded from participation; these were presented as negative codes. Conclusions: This study shows that the eHealth service Sisom can increase children´s participation during appointments with healthcare professionals. Future research should focus on evaluating outcomes on individual and organizational levels and in different healthcare contexts. © The authors. All rights reservedFunder: Region Halland and the Center for Research on Welfare, Health, and Sport at Halmstad University.