Correlates of perceived shared decision making with parents of children with special healthcare needs: Findings from the PART-CHILD study

Objective To assess the extent of perceived shared decision making (SDM) with parents of pediatric patients and to examine its association with characteristics of patients, professionals, and healthcare facilities. Methods Parents of pediatric patients (n=4,383) were recruited in 15 social pediatric centers in Germany and provided information on perceived SDM (binary CollaboRATEpediatric score: optimal versus suboptimal extent of SDM), child age and sex, type of impairment, appointment, and healthcare professional present at the appointment. Organizational characteristics were assessed in a cross-sectional survey of staff at the study sites. Results Overall, 58.4% of parents reported an optimal extent of SDM. The optimal extent of SDM was more likely reported by parents of girls (OR=1.27, p<0.001) and children with physical (as opposed to cognitive and combined) impairments (OR=1.30, p=0.006), and after appointments attended by allied health professionals (OR=1.28, p=0.004). In addition, parents in facilities receiving financing in addition to compensation by statutory health insurance funds were less likely to report an optimal extent of perceived SDM. Conclusion While SDM with parents was mostly related to individual characteristics of children and professionals at appointments, organizational characteristics seemed less relevant in our study. Practice implications Staff should be made aware of lower SDM with parents of boys, older children, and those with cognitive impairments, and trained to improve the SDM in these groups.