Refinement of an Instrument to Measure the Needs of Parents of Sick Children in the Context of Family Centered Care.

BACKGROUND AND PURPOSE: The purpose of this study was to refine an instrument to capture the perceived needs of parents whose children are seriously ill. This article describes the psychometric properties of the Parents' Needs Scale (PNS), a translated, revised 22-item short form from an original instrument that was developed and tested on parents of children with cancer in Hong Kong. METHODS: The study was done in three stages that included (a) factor analysis of two samples recruited from clinics in Northern Virginia of parents of children with cancer (n = 74) and end stage renal disease (ESRD) (n = 30); (b) known groups validity testing with two groups of parents recruited in a parallel study on children with special needs (n = 15) and a control group of well children (n = 23); and (c) concurrent validity testing on the subsample of parents of children with special needs using the known measure of Impact on the Family Scale (IFS). Data collection for the stages included mailed questionnaires and follow-up telephone interviews. RESULTS: Exploratory factor analysis using the common factor approach identified two domains: (1) needs related to my child's illness and (2) needs unrelated to my child's illness. The factorial structure was followed by item scaling tests to determine item-level convergence and discriminative validity, as well as scale reliability for the two domains (Cronbach's alpha = 0.93 and 0.90). Domain-level discriminant validity tests yielded significant differences on several expected characteristics of the child and/or family based on the literature. The final 22-item scale was reworded and used to establish known groups validity by comparing the two groups of children with acute illnesses from the previous study with two control groups of parents of children who were well or children with special needs but not acutely ill, yielding significant results on both factors (p < 0.001). A final test of concurrent validity was performed on the parents of children with special needs measures of parent need with their reported impact on the family yielding significant correlations on predicted variables. CONCLUSIONS: The PNS can measure parents' needs with demonstrated psychometric validity and reliability.