Decision making of patients and their parents in healthcare decisions in pediatric neurology

Abstract

Changes in the current clinical relationship involve incorporating children and adolescents as subjects of rights in healthcare decisions, within their context and based on their values, through a relational autonomy approach. The shared decision-making (SDM) process has demonstrated positive effects in pediatrics and is a current social demand.

Objective: To evaluate the process of patient and parent participation in healthcare decisions in neuropediatric outpatient consultations.

Patients and Method: Descriptive, quantitative cross-sectional study in two urban hospitals in Valparaíso. The study population consisted of pediatric patients aged 7-18 years and their parents. The CollaboRATEpediatric instrument was used to assess the level of satisfaction with the SDM process. Demographic information was recorded and analyzed according to recommendations.

Results: Sixty-two parent/child pairs participated. A Top Score was achieved in 56% of cases (the percentage in which the maximum score was obtained in the three surveys), with no significant difference between centers. The figures observed were lower than internationally reported levels. The lack of correlation between parents’ perceptions of their participation in decisions and those expressed by the children and adolescents themselves was noteworthy. All female children and adolescents felt well-involved in decision-making, although this difference was not statistically significant.

Conclusions: In this study, the score obtained was lower than international reports. High rates of paternalism have been described in Latin America. The difference between parents’ and children’s perceptions of parental involvement suggests the need to improve care conditions and communication strategies. The non-significant trend among female children and adolescents is consistent with international reports. The role of gender in adopting a paternalistic attitude among professionals is described.