593 - Caregiving Networks of Children with Medical Complexity Living in Socioeconomically Disadvantaged Neighborhoods

Poster Number: 593
Publication Number: 593.403

Makenzie B. Morgen, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Nicole Werner, University of Wisconsin-Madison, Madison, WI, United States; Madeline Q. Kieren, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Mary Ehlenbach, Univ of WI School of Medicine & Public Health, Madison, WI, United States; Barbara J. Katz, Family Voices of Wisconsin, Madison, WI, United States; Neal deJong, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, United States; Carolyn C. Foster, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Christopher J. Stille, University of Colorado School of Medicine, Aurora, CO, United States; David Ming, Duke University School of Medicine, Durham, NC, United States; Joanna Thomson, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Ryan J. Coller, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States

Background: Children with Medical Complexity (CMC) have unique caregiving needs extending to homes and communities. Individuals supporting a child’s daily needs comprise a “caregiving network,” often led by parents, and including extended family, educators, in-home professionals, community providers, and others. Early data suggest living in a disadvantaged neighborhood affects caregiving network structure and function. The influence of a network’s structure and function on CMC health is unknown, but a potentially important intervention target.

Objective: This study aims to describe structures of caregiving networks of CMC living in socioeconomically disadvantaged neighborhoods and barriers and facilitators to network functions.

Design/Methods: From April to July of 2021, six semi-structured, qualitative focus groups were conducted with caregivers of CMC living in socioeconomically disadvantaged neighborhoods receiving complex care at one of five children’s hospitals. Neighborhood disadvantage was defined as the lowest quintile using the Area Deprivation Index. Focus groups included “primary caregivers”, i.e., parent/guardian (3 groups), or “secondary caregivers”, i.e., non-primary parent or non-parent (3 groups). Focus groups were conducted virtually, recorded, transcribed, and dual-coded. Team-based discussion was used to sort codes into groups with shared concepts to generate themes describing caregiving network structures, and barriers/facilitators of network functions.

Results: Primary caregivers (n=18) and secondary caregivers (n=9) were mainly female (81%), and mean caregiving network size was 3.9 (SD=1.60). Five themes were identified. First, caregiving network configurations differed by degrees of desired centrality (organization around a single caregiver). Second, families need tools designed to support their desired network configuration. Third, difficulty filling needed caregiving roles influence the network’s density and transitivity (closed loop connections between more than 2 caregivers). Fourth, high network centrality and low density creates vulnerability for reliable care delivery and leads to higher family workload (Figure 1). Finally, families consider the child as a network member, but other caregivers struggle to promote this role. Conclusion(s): Caregivers of CMC living in disadvantaged neighborhoods have different preferences for network structure and function; however, barriers limit achieving their desired configuration. Understanding how caregiving network structure/function affects CMC health, and interventions that support ideal configurations, are important future directions.
CV-Makenzie MorgenCV- December 2021.pdf