Listening to the Voice of the Hospitalized Child: Comparing Children's Experiences to Their Parents

Background: Pediatric patients can provide feedback about their healthcare experiences. However, most do not and are instead represented by their parents. A widely accepted notion is that pediatric patients lack the capacity, vocabulary, and preferences needed to answer meaningful questions related to their healthcare. However, because the pediatric patients' experience can differ from the perspective of their parents, the use of proxy reporting ultimately reduces the hospital's ability to address the concerns of pediatric patients directly. Objectives: The overall goals of this survey study were (1) to identify the key domains whereby pediatric patient and parent preferences differ and (2) to investigate the extent to which pediatric patients perceive their healthcare experiences differently from their parents. Methods: This study employed an adult version, an older child version, and a younger child version of a 47-question survey instrument divided into seven key domains: experience with the admission process, interactions with nurses, interactions with doctors, care in the hospital, hospital environment, experience before discharge, and overall score. The instrument was developed to survey children (ages 4-17) recently discharged from the hospital and their parents or guardian. Results: The findings suggest pediatric patients reported interest in engaging with their doctors about their healthcare. However, pediatric patients younger than 13 years old reported having fewer pediatric doctors ask them about their healthcare, with the youngest group reporting the worst experiences. Moreover, differences in perceptions were identified between pediatric patients and their parents regarding hospital quality and performance. Pediatric patients reported less pain and higher satisfaction regarding the cleanliness of the room and their experience in the admission process than their parents. Patient and parent responses were significantly different within each of the seven domains. Conclusion: The results speak to the larger discussion of whether current hospital settings can engage with small children at the level necessary to capture meaningful feedback about their healthcare experience. By providing additional evidence to the contrary, this survey study brings further context to misconceptions regarding pediatric patients' involvement as crucial actors in the patient-and-family-centered care model.