Understanding parental preferences for participants in medical decision-making for their hospitalized children

OBJECTIVES: Family-centered care promotes parental engagement in medical decision-making for hospitalized children. Little is understood about parental preferences and factors influencing the desire to involve extended family in decision-making. We explored parent and family member interest in participation in medical decision-making. METHODS: Parents of hospitalized children #7 years old admitted to the inpatient service were interviewed regarding preferences for self-, other parent, and extended family involvement in decision-making. Scores were calculated for each potential participant on a scale of 1 to 5 (5 indicating that parents strongly agreed with participation). Associations of decision-making preferences with parental age, education, language, and health; the involvement of a child with chronic illness; and the level of clinical acuity were assessed with x² tests, Wilcoxon rank tests, and the Spearman correlation. RESULTS: There were 116 participants. Parents’ median level of interest in participation in decision-making was as follows: self (4.3; interquartile range [IQR]: 4-4.6); other parent (3.6; IQR: 2.7-4), and family (2.0; IQR: 1.7-2.7). Parents with better physical health (P, .001) and those in a relationship with the other parent (P, .001) were more likely to desire involvement of the other parent in medical decision-making. This was also true for those who faced higher acuity scenarios. Parents,35 years old (P, .01) and those who were interviewed in Spanish (P 5 .03) were more likely to desire participation of extended family members. CONCLUSIONS: Parents of hospitalized children want to participate in medical decision-making. Desire for the involvement of other family members is complex; therefore, discussions regarding parental preferences are necessary.