Are parents doing what they want to do? Congruency between parents' actual and desired participation in the care of their hospitalized child

摘要

Family-centered care is integral to pediatric nursing practice, and includes supporting parents to participate in their hospitalized child's care. Research to date suggests that parents' actual participation in care may differ from their desired participation in care, and that such discrepancies may cause parental distress. Supporting parental participation in a way that facilitates congruency between actual and desired participation may contribute to a satisfying experience for families of hospitalized children. This cross-sectional study measured parents' actual and desired level of participation in care of their hospitalized child and examined the congruency between them. Participants (N=191), the majority of whom were mothers, provided demographic data and completed two instruments measuring desired and actual participation in care. Study results indicate a significant difference between parents' actual and desired participation (t=-9.382, df=190, p<0.0001). The majority of parents expressed a desire to increase their participation. The care activities in which these parents participated are described, including providing comfort, assisting with activities of daily living and advocating for their child. Nurses caring for hospitalized children and their families need to remember that parental preferences for participation will vary, and they need to be prepared to support parents' participation at the level parents choose. Understanding congruency between actual and desired levels of participation can promote awareness of parents' preferences for participation.