How Avoidable are Hospitalizations for Children With Medical Complexity? Understanding Parent Perspectives

Abstract

Objective: Children with medical complexity (CMC) are a small group that utilizes large amounts of health care resources. Although parents are the primary healthcare decision-makers for their children, little is known from their perspective about why CMC are hospitalized. We sought to understand what parents think about factors leading to hospitalization and whether any recent hospitalizations might have been avoidable.

Methods: We conducted qualitative, semistructured interviews with 35 parents of hospitalized CMC who receive care in the Pediatric Medical Home Program, a complex care program at University of California, Los Angeles. Interviews were conducted in English and in Spanish, audio-recorded, transcribed and translated, then coded in ATLAS.ti (Scientific Software Development Gmbh, Berlin, Germany) for qualitative analysis. We sorted qualitative codes into groups with shared concepts, to generate emergent themes.

Results: Parents described their experiences leading up to their children's hospitalization, but no one suggested that the hospitalization was potentially avoidable. Most parents perceived their children as having higher susceptibility because of underlying conditions, perceived the symptoms they observed as high-risk, and described seeking emergent care only when they no longer were comfortable at home. Decisions about where to seek care were influenced by health care system factors such as accessibility and continuity of care. Most parents expressed a desire to learn more about their children's conditions and how best to care for them at home.

Conclusions: Parents of CMC believe that hospitalizations are largely unavoidable because of higher susceptibility and higher risk. Increasing parents' self-efficacy in caring for children at home might influence their decisions to seek emergent care.

Keywords: children with medical complexity; hospital utilization; parent perspectives; qualitative research.