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

Bergen B Nelson; Ryan J Coller; Adrianna A Saenz; Paul J Chung; Avery Kaplan; Carlos F Lerner; Thomas S Klitzner

doi:10.1016/j.acap.2016.04.009

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

Acad Pediatr. 2016 Aug;16(6):579-86. doi: 10.1016/j.acap.2016.04.009. Epub 2016 Apr 30.

Authors

Bergen B Nelson¹, Ryan J Coller², Adrianna A Saenz³, Paul J Chung⁴, Avery Kaplan⁵, Carlos F Lerner³, Thomas S Klitzner³

Affiliations

¹ Department of Pediatrics and Children's Discovery and Innovation Institute, Mattel Children's Hospital and David Geffen School of Medicine, University of California, Los Angeles, Calif. Electronic address: bnelson@mednet.ucla.edu.
² University of Wisconsin School of Medicine and Public Health, Madison, Wis.
³ Department of Pediatrics and Children's Discovery and Innovation Institute, Mattel Children's Hospital and David Geffen School of Medicine, University of California, Los Angeles, Calif.
⁴ Department of Pediatrics and Children's Discovery and Innovation Institute, Mattel Children's Hospital and David Geffen School of Medicine, University of California, Los Angeles, Calif; Department of Health Policy and Management, Fielding School of Public Health at UCLA, University of California, Los Angeles, Calif; RAND Health, RAND Corporation, Santa Monica, Calif.
⁵ University of Southern California, Los Angeles, Calif.

PMID: 27142492
DOI: 10.1016/j.acap.2016.04.009

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.

Publication types

Research Support, U.S. Gov't, P.H.S.

MeSH terms

Adolescent
Attitude to Health*
Child
Child, Preschool
Continuity of Patient Care
Disease Susceptibility
Female
Health Services Accessibility
Hospitalization*
Humans
Male
Multiple Chronic Conditions*
Parents*
Qualitative Research
Risk
Self Efficacy