Construction and psychometric testing of the EMPATHIC questionnaire measuring parent satisfaction in the pediatric intensive care unit.

PURPOSE: To construct and test the reliability and validity of the EMpowerment of PArents in THe Intensive Care (EMPATHIC) questionnaire measuring parent satisfaction in the pediatric intensive care unit (PICU). METHODS: Structured development and psychometric testing of a parent satisfaction-with-care instrument with the results of two cohorts of parents (n = 2,046) from eight PICUs in the Netherlands. RESULTS: In the first cohort, 667/1,055 (63%) parents participated followed by 551/991 (56%) parents in the second cohort. The empirical structure of the instrument was established by confirmatory factor analysis with the first sample of parents confirming 65 statements within five theoretically conceptualized domains: information, care and cure, organization, parental participation, and professional attitude. The standardized factor loadings were greater than 0.40 in 63 statements. Cronbach's α, a measure of reliability, per domain ranged from 0.73 to 0.93 in both cohorts with no significant difference documenting the reliability over time. Beside rigorous content and face validity, the congruent validity of the instrument showed adequate correlation with four gold standard questions measuring overall satisfaction. The non-differential validity was confirmed with no significant differences between the population characteristics and the domains, except that parents with a child for a surgical admission were more satisfied on information issues. CONCLUSIONS: The final EMPATHIC questionnaire incorporates 65 statements. The empirical structure of the satisfaction statements and domains was satisfactory. The reliability and validity proved to be adequate. The EMPATHIC questionnaire is a valid quality performance indicator to measure quality of care as perceived by parents.

A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units.

PURPOSE: To explore parents' experiences during the admission of their children to a pediatric intensive care unit (PICU). METHOD: Qualitative method using in-depth interviews. Thematic analysis was applied to capture parents' experiences. Thirty-nine mothers and 25 fathers of 41 children admitted to seven of the eight PICUs in university medical centers in The Netherlands were interviewed. RESULTS: Parents were interviewed within 1 month after their child's discharge from a PICU. Thematic analysis identified 1,514 quotations that were coded into 63 subthemes. The subthemes were categorized into six major themes: attitude of the professionals; coordination of care; emotional intensity; information management; environmental factors; parent participation. Most themes had an overarching relationship representing the array of experiences encountered by parents when their child was staying in a PICU. The theme of emotional intensity was in particular associated with all the other themes. CONCLUSIONS: The findings provided a range of themes and subthemes describing the complexity of the parental experiences of a PICU admission. The subthemes present a systematic and thematic basis for the development of a quantitative instrument to measure parental experiences and satisfaction with care. The findings of this study have important clinical implications related to the deeper understanding of parental experiences and improving family-centered care.

Differences in the perceptions of parents and healthcare professionals on pediatric intensive care practices.

OBJECTIVE: To explore similarities and differences in perceptions on pediatric intensive care practices between parents and staff by using data from two studies. DESIGN: A two-round Delphi method among nurses and physicians followed by an empiric survey among parents. SETTINGS: Pediatric intensive care units at eight university medical centers. SUBJECTS: Parents whose child has been admitted to a pediatric intensive care unit, nurses, and physicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Outcome measures were 74 satisfaction-with-care items divided into five domains: 1) information; 2) care and cure; 3) organization; 4) parental participation; and 5) professional attitude. The Delphi study was completed by 218 nurses and 46 physicians and the survey by 559 of 1042 (54%) parents. Parents rated 31 items more important than the professionals based on the standardized mean difference (Cohen's d, 0.21-1.18, p < .003). Ten of these were related to information provision. Information on the effects of medication had the largest effect size (Cohen's d 1.18, p = .001). Correct medication administration by professionals was also rated significantly more important by parents (Cohen's d 0.64, p = .001). The professionals rated 12 items more important than the parents (Cohen's d -0.23 to -0.73, p < .005), including three about multicultural care. Significant differences remained on two of the three multicultural care items when the Dutch (n = 483) and non-Dutch parents (n = 76) were separately compared with professionals. On the domain level, parents rated the domains information and parental participation more important than the professionals (Cohen's d 0.36 and 0.26, p = .001). CONCLUSIONS: Compared with the parents' perceptions, nurses and physicians undervalued a substantial number of pediatric intensive care unit care items. This finding may reflect a gap in the understanding of parental experiences as well as incongruity in recognizing the needs of parents.

Perceptions of parents on satisfaction with care in the pediatric intensive care unit: the EMPATHIC study.

PURPOSE: To identify parental perceptions on pediatric intensive care-related satisfaction items within the framework of developing a Dutch pediatric intensive care unit (PICU) satisfaction instrument. METHODS: Prospective cohort study in tertiary PICUs at seven university medical centers in The Netherlands. PARTICIPANTS: Parents of 1,042 children discharged from a PICU. RESULTS: A 78-item questionnaire was sent to 1,042 parents and completed by 559 (54%). Seventeen satisfaction items were rated with mean scores <8.0 (1, completely unimportant, to 10, very important) with standard deviations > or =1.65, and thus considered of limited value. The empirical structure of the items was in agreement with the theoretically formulated domains: Information, Care and Cure, Organization, Parental Participation, and Professional Attitude. The Cronbach's alpha of the domains ranged between 0.87 and 0.94. CONCLUSIONS: Parental perceptions on satisfaction with care measures were identified and prioritized. Reliabilities of the items and domains were of high level.