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

Abstract

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.

Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity

“…Nurses and providers highlighted the importance of balancing family preferences for discharge timing with patient medical needs and parents' need for education on changes to medical status and care plans, as discharging CMC before they are medically ready increases the risk of readmission (Leyenaar et al, 2017). Limited parental involvement makes it more difficult to understand the home environment and set up appropriate home care services and equipment, and may delay discharge (Foster et al, 2017; Leary et al, 2020). Premature discharge and insufficient parental education also increase risks of health issues at home and unanticipated readmissions (Leyenaar et al, 2017).…”

“…These extensive needs require frequent interactions with multiple healthcare providers and systems. Children with medical complexity experience repeated hospitalizations and are at increased risk of readmission after discharge, leading to fragmented, uncoordinated care with multiple transitions within and across facilities (Breneol et al, 2017; Foster et al, 2017; Leary et al, 2020; Lyles et al, 2017).…”

“…Some within hospital transitions can be reassuring for parents, particularly when they reflect a child's improving condition, but they may also provoke anxiety by requiring adaptation to a new environment, staff, and approaches to care (Berube et al, 2014; Suleman et al, 2019). Communication and care coordination are crucial during hospital transitions for CMC: poor communication and ineffective care coordination lead to incomplete medical histories, unnecessary and inconsistent testing and treatment, medical errors, frustration for providers and parents, and parental discomfort (Foster et al, 2017; Leary et al, 2020; Rauch, 2018; Rennick et al, 2019). Parents of hospitalized CMC value consistent, regular communication with the care team, regardless of the child's status, without having to ask (Berube et al, 2014; Falkenburg et al, 2018).…”

“…Comprehensive discharge planning, including parents, supports a successful transition back into the community (Leyenaar et al, 2017; Markwalter et al, 2019). Limited parental involvement often leads to difficulty obtaining appropriate prescriptions and durable medical equipment following discharge, which can contribute to postdischarge changes in medical status and increased risk of rehospitalization (Boss et al, 2017; Bucholz et al, 2019; Leary et al, 2020; Leyenaar et al, 2017; Pordes et al, 2018).…”

“…Care models and complex care programs can fill gaps in care coordination and care management, reduce costs, and lead to improved outcomes, but are not widely available, and are often institution‐specific (Breneol et al, 2017; Karpook & Werner, 2016; Kuo et al, 2015; Simon et al, 2012). Without these models and programs, responsibility for care management and coordination shifts to parents and families, which requires substantial time, adds to their already‐extensive obligations and can lead to frustration (Cady & Belew, 2017; Karpook & Werner, 2016; Leary et al, 2020).…”