Congruency Between Parents' Actual and Desired Participation in the Care of Their Hospitalized Child

Abstract

<p> Parents' participation in the care of their hospitalized child is an integral part of pediatric nursing practice and is considered to be beneficial for children and parents. However, parents may not discuss their participation with nurses and instead base their activities on their perceptions of nurses' assumptions and expectations regarding parents' participation in care. Nurses may assume a gate keeping role regarding parents' participation, deciding what parents will do and then monitoring these activities. Nurses' heavy workloads may preclude the teaching necessary for parents to participate in certain aspects of care. As a result, parents' actual participation in care may be more or less than their desired level of participation. Measuring actual participation alone may thus give an incomplete picture of a family's situation.</p> <p> To date, no attempt has been made to measure the difference between parents' actual and desired participation in care. A cross-sectional, descriptive design was used to measure parents' actual level of participation in care and their desired level of participation in care, and to describe the congruency between them. Parents of children admitted to medical and surgical units in a tertiary care children's hospital (N = 191) completed two instruments measuring desired and actual participation in care as well as providing demographic data. Study results indicate a difference between parents' actual and desired participation, with the majority of parents expressing a desire to increase their participation. Parents' care activities included providing comfort, assisting with activities of daily living, assisting with mechanical care and advocating for the hospitalized child. Recommendations are made for nursing practice at the bedside, for nursing administration and for future research. Measuring congruency between actual and desired levels of participation can contribute to our understanding of parents' experiences of their child's hospitalization and may provide a unique perspective on parental participation in care.</p>