Accurate reporting of patient experiences is a crucial resource for hospitals engaged in patient-and-family-centered care (PFCC). However, studies suggest that most children do not respond to patient satisfaction surveys and are instead represented by their parents or guardians. This study reviewed instruments used to obtain feedback from children about their healthcare experiences for two purposes: 1) To understand the limitations of current tools and 2) To determine if creating a new instrument is necessary. A systematic review was performed on PubMed, Medline, CINAHL, and Web of Science to identify peer-reviewed questionnaires designed to collect children's healthcare experiences. Out of the 9,822 retrieved studies, 17 met the inclusion criteria. Among the seventeen studies, only one provided versions of the study for non-English speaking respondents. Only seven studies developed their questionnaires, nine studies used tools developed by other authors, and one study did not specify. Only 58.82% of the included studies collected both the child and their parents' responses, and the remaining 41.18 % collected data solely from the child. Lastly, the included studies relied too heavily on questions that required the child to recall detailed accounts of their hospital experiences, the quality of their hospital room, and the hospital equipment used in their treatment. The study finds that these questions not only led to mixed results, it also limited self-reporting. Further, the study acknowledges the need to develop a superior instrument that asks children for their perspective of their healthcare experiences in an age-appropriate and culturally accessible way.

Experience Framework

This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)