Evaluating Parents’ and Children’s Assessments of Competence, Health Related Quality of Life and Illness Perception

Research on participatory medical decision making in children is still scarce. At the same time, there is broad consensus that involving young patients in decision making processes increases their adherence to medical procedures and reduces anxiety. Thus, this cross-sectional study’s objective was to assess mothers’, fathers’, and children’s evaluation of the child’s decisional competence in the context of psychosomatic and psychiatric care and test for possible predictors of competence such as illness perception, health-related quality of life (HrQoL), socioeconomic status, gender, and age. Fifty-four families (mother, father, child triads; total N = 143) completed self-report questionnaires. Age of the children ranged from 6–16 (M = 11.68, SD = 2.74; 43% female), and the majority had a diagnosis of hyperkinetic, depressive or pervasive developmental disorders. 80% of children were German native speakers, and 27–37% of parents had a university degree. Findings show that parents rate the consequences of the child’s illness as more severe and report to understand it better than the child. Also, children indicate the proposed age for autonomous decision making as lower (13.55 years) than their parents (15.63, 16.58). Furthermore, age of child, mother, and father, HrQoL, illness coherence, and emotional illness representation emerged as significant predictors of the decisional competence subscales understanding, autonomy, decision making, and attitudes. This study demonstrates the importance of considering all parties in shared decision making. Future research is challenged to more comprehensively evaluate contributing factors to achieve a more valid picture of children’s decisional competence.