Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity

Abstract

Hospitalization is a relatively common occurrence for patients with medical complexity. In fact, high health care use is a defining feature of children with medical complexity (CMC). 1 CMC are a heterogeneous and growing population, unified by conceptual similarities: multisystem and frequently progressive chronic conditions leading to substantial functional limitations, familyidentified service needs, and high healthcare use. 1 Annually, approximately 13%-20% of CMC are hospitalized 2,3 and 50%-80% of CMC healthcare spending goes to hospital care. 1,3,4 However, some hospitalizations experienced by CMC are avoidable. 5 Substantial variation in hospital utilization for CMC across

Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity

“…The findings also highlight the juggling roles of parents/guardians as both a caregiver and a parent. This theme underscores the unique challenge faced by parents/guardians in balancing their roles and responsibilities, which can have implications for their own well-being and the quality of care provided [ 5 , 47 – 50 ]. Integrating parents/guardians as part of the care team and providing suitable support and coaching for families, as trialled and recommended in other research, may be effective in addressing this challenge [ 54 – 57 ].…”

Feasibility of social network analysis to study outcomes of children with medical complexity

“…The well-described challenges families face maintaining reliable caregiver participation (especially in-home professionals) 16,17 suggest that network characteristics may be an important contributor to CMC health outcomes such as hospitalization. 3 Based on prior research illustrating that parents of CMC establish networks of caregivers to meet caregiving needs amidst capacity barriers, 18,19 SNA is a valuable technique to explore the nature of network interactions and how they influence health. This direction could also uncover how families create and implement strategies to ensure safe, standardized care in the home and community across their network, leading to network-based interventions to build and manage effective caregiving networks.…”

“…We observed that SNA is a feasible tool to study CMC caregiving networks, and preliminary data support future hypothesis testing that specific network configurations predict hospital use. The well‐described challenges families face maintaining reliable caregiver participation (especially in‐home professionals) 16,17 suggest that network characteristics may be an important contributor to CMC health outcomes such as hospitalization 3 . Based on prior research illustrating that parents of CMC establish networks of caregivers to meet caregiving needs amidst capacity barriers, 18,19 SNA is a valuable technique to explore the nature of network interactions and how they influence health.…”

“…1 The quantity and quality of daily care needed by CMC, averaging >50 h per week, exceeds the caregiving capacity of one individual and surpasses what is considered safe 2 , and this imbalance may drive health crises leading to hospitalization. 3 To meet their child's needs, families establish caregiving networks with others who care for their child (e.g., extended family, home nurses, respite, and school personnel). 4 However, families struggle to develop and implement strategies for ensuring safe, reliable care among the caregiving network.…”

“…Children with medical complexity (CMC) are cared for at home by families and other caregivers, that is, caregiving networks 1 . The quantity and quality of daily care needed by CMC, averaging >50 h per week, exceeds the caregiving capacity of one individual and surpasses what is considered safe 2 , and this imbalance may drive health crises leading to hospitalization 3 . To meet their child's needs, families establish caregiving networks with others who care for their child (e.g., extended family, home nurses, respite, and school personnel) 4 .…”