Family Experience With Hospital Care Teams: A Qualitative Investigation

OBJECTIVE: Research on families' experiences in hospital settings has typically focused on quantitative assessments of patient experience or on narrow aspects of hospital care, specific conditions, or particular service lines or units. The current study provides depth of insight into cross-cutting issues experienced by families across hospitals in the United States. PATIENTS AND METHODS: Parents and guardians of children who spent at least 1 night in a hospital setting during the last 12 months were recruited from KnowledgePanel, a probability-based online panel that is geographically diverse and representative of the US population. Fifty-two parents participated in hour-long, researcher-administered qualitative interviews about their family's experience. Care was delivered in a variety of hospital types, for a range of medical conditions. Parent interviews were transcribed and coded. RESULTS: In addition to topics highlighted in prior work, parent interviews identified several important aspects of the hospital experience that were widespread across medical conditions, geographic regions, and hospital types. Themes included the importance of keeping families informed throughout the hospital stay, unique perspectives related to perceived clinical quality, significant room for improvement in interactions with medical trainees, observable gaps in care coordination, important perspectives on shared decision-making practices, and the need for parent vigilance and advocacy during pediatric hospitalizations. CONCLUSIONS: The detailed accounts provided by parents contain a wealth of information that can inform quality improvement efforts at hospitals generally. Hospitals may also wish to engage families in meaningful and detailed conversations about the themes identified in this article.