Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study

Abstract

OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.