Developing the Children's Critical Illness Impact Scale: capturing stories from children, parents, and staff.

ABSTRACT

OBJECTIVE: With the evolution of pediatric critical care medicine has come an awareness of the ethical imperative of healthcare professionals to attend to the psychological sequelae of technologically intensive care. Recent attempts to measure psychological outcomes in these children have been limited. The purpose of this study was to develop a measure of posthospitalization distress, the Children's Critical Illness Impact Scale (CCIIS), for children aged 6-12 yrs following pediatric intensive care unit hospitalization. DESIGN: A measurement development study consisting of two phases 1) item generation and scale formatting; and 2) item reduction and scale revisions. Items were generated following thematic analysis of qualitative data from focus groups and individual interviews with children, parents, and healthcare professionals. Children reviewed items for interpretability and importance and assessed scaling technique and item presentation; healthcare professionals further evaluated item relevance. SETTING: The pediatric intensive care units of three quaternary care, Canadian pediatric teaching hospitals. PATIENTS Phase 1 included 18 children, 22 parents, and 12 healthcare professionals (n = 52). Phase 2 included eight children and four healthcare professionals (n = 12). MEASUREMENTS AND MAIN RESULTS: Five key domains were identified in the thematic analyses worries, fears, friends and family, sense of self, and behaviors. Thirty-six items were initially generated, and subsequent item reduction resulted in 23 items that were retained on the final scale. Items were generally rated extremely relevant and were judged to capture the content area (content validity index = 0.87). The CCIIS was easily understood, and the scaling format worked well. Older children preferred written items, while younger children will require a modified, pictorial version. CONCLUSIONS: The CCIIS is a new self-report measure with demonstrated content validity and specific relevance for young school-aged children following pediatric intensive care unit hospitalization. Valid, accessible, and developmentally appropriate measures are essential to identify high-risk children and, ultimately, promote healthy growth and development.