Parent Perceptions of Real-time Access to Their Hospitalized Child’s Medical Records Using an Inpatient Portal: A Qualitative Study

Abstract

A B S T R A C TBACKGROUND AND OBJECTIVES: Engaging with parents in care improves pediatric care quality and patient safety; however, parents of hospitalized children often lack the information necessary to effectively participate. To enhance engagement, some hospitals now provide parents with real-time online access to information from their child's inpatient medical record during hospitalization. Whether these "inpatient portals" provide benefits for parents of hospitalized children is unknown. Our objectives were to identify why parents used an inpatient portal application on a tablet computer during their child's hospitalization and identify their perspectives of ways to optimize the technology.METHODS: Semistructured in-person interviews were conducted with 14 parents who were given a tablet computer with a commercially available inpatient portal application for use throughout their child's hospitalization. The portal included vital signs, diagnoses, medications, laboratory test results, patients' schedule, messaging, education, and provider pictures and/or roles. Interviews were audio recorded and transcribed and continued until reaching thematic saturation. Three researchers used an inductive approach to identify emergent themes regarding why parents used the portal. RESULTS:Five themes emerged regarding parent motivations for accessing information within the portal: (1) monitoring progress, (2) feeling empowered and/or relying less on staff, (3) facilitating rounding communication and/or decision-making, (4) ensuring information accuracy and/or providing reassurance, and (5) aiding memory. Parents recommended that the hospital continue to offer the portal and expand it to allow parents to answer admission questions, provide feedback, and access doctors' daily notes.CONCLUSIONS: Providing parents with real-time clinical information during their child's hospitalization using an inpatient portal may enhance their ability to engage in caregiving tasks critical to ensuring inpatient care quality and safety.

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

“…Better recall or reinforcement of information was reported as a benefit in many studies (7/33, 21%) [24,38,45,[51][52][53][54], as was improved parental knowledge and understanding of their child's health [39,51,53,[55][56][57][58][59]96] and a sense of control [39]. In addition to access to information, parents reported enhanced communication and partnership with providers [11,39,45,51,53,[55][56][57][58].…”

“…Better recall or reinforcement of information was reported as a benefit in many studies (7/33, 21%) [24,38,45,[51][52][53][54], as was improved parental knowledge and understanding of their child's health [39,51,53,[55][56][57][58][59]96] and a sense of control [39]. In addition to access to information, parents reported enhanced communication and partnership with providers [11,39,45,51,53,[55][56][57][58]. In a study on parents of hospitalized children, the addition to the PAEHR of pictures of staff taking care of the child was highly appreciated [58].…”

“…Parents of children who were seriously ill consistently reported positive experiences, for example, parents who had immediate access to laboratory test results in an inpatient portal during a child's hospitalization [55] and parents of children diagnosed with cystic fibrosis, juvenile idiopathic arthritis, or diabetes mellitus [11]. Chung et al [43] reported that 92% (78/85) of parents of hospitalized neonatal children wished to receive information even if it was "bad news."…”

Provider Experiences With Offering Families Bedside Health Record Access Across a Children’s Hospital

“…[2][3][4] In one study, parents of children admitted to a general medical and surgical unit described that access to this clinical information improved their ability to monitor their child' s progress, identify inaccuracies, and communicate and make decisions about their child' s care with inpatient providers. 5 Almost all parents (94%) felt that the information in the portal reduced or did not change the number of questions they had for their child' s doctors and nurses.…”

In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders

“…Kelly et al [ 28 , 29 ] were the first to investigate the use of an inpatient portal by parents of pediatric patients, increasing our understanding of parental motivations for accessing their child’s inpatient records in real time. Of the 14 parents interviewed in that study, 13 were interested in having access to physicians’ notes in the portal:…”