Abstract
Most child-patients do not provide their own account of their healthcare experiences and are instead represented by their parents/legal guardians. A common belief is that children lack the perceptiveness, knowledge, experience, or maturity needed to answer questions on a complex subject such as their health and the care received while hospitalized. However, the literature suggests that children can provide valuable feedback about their experiences, which can differ from the perspective of their parent/guardian. The overall goal of this project is to 1. Determine whether child-patients perceive their healthcare experiences differently than their parents. 2. Identify the key domains whereby they differ. 3. Evaluate and explain the differences in perceived healthcare quality between child-patient and parent. 4. Develop innovative and engaging tools/instruments to obtain hospitalized children’s experience and meaningful feedback. This paper will describe the methodology, insights, and challenges of developing the tools and instruments aimed at understanding how children define their quality of care. A semi-structured, 10 question interview and multiple versions of a 45-question survey instrument was prepared to test recently hospitalized children (ages 4-17) and their parent/guardian along eight key domains. While the goal of the interview is to identify the key domains that reflect a child’s measures of quality, the survey seeks to provide a comprehensive outlook at a pediatric patient’s experience from start to finish. Pilot testing showed that Cronbach alpha values were within the acceptable range (> 0.7), and younger children were consistently able to complete the interview and survey within 45-minute time. It was observed through the study that children have a unique awareness of their own experiences and can convey their thoughts if given the opportunity and were able to provide specific ideas for improvement.