498 - Caregiver Experiences of Discrimination in Healthcare and Pediatric Home Healthcare Access and Quality

Publication Number: 1478.498

S. Margaret Wright, Children's Mercy Hospitals and Clinics, Kansas City, MO, United States; Emily Cramer, Children's Mercy Kansas City, Kansas City, MO, United States; Carolyn Foster, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Amanda Warniment, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Joanna Thomson, Cincinnati Children's, Cincinnati, OH, United States; Erica Stearns, University of Illinois Chicago, Anna, IL, United States; Caitlin Koob, Medical University of South Carolina, Charleston, SC, United States; Stefanie Ames, University of Utah School of Medicine, Salt Lake City, UT, United States

Background: Children with complex health conditions often require home healthcare services (HHC) to provide essential support for managing their conditions at home. However, numerous limitations and barriers impact HHC delivery leading to decreased access and poor quality of care. Discrimination in other healthcare settings is associated with forgone healthcare. However, the relationship between experiences of discrimination in healthcare and HHC access and quality is not well understood.

Objective: To examine the associations between caregiver-reported discrimination in medical settings and HHC access and quality.

Design/Methods: Participants were enrolled survey respondents in the 9-site Family CIRCLE longitudinal cohort of family caregivers of children with ≥1 complex chronic condition. English- and Spanish-speaking caregivers completed surveys which included child and caregiver demographics, the Discrimination in Medical Settings (DMS) Scale adapted for child health, the PediHome measure of HHC quality, and additional assessments. Outcomes were HHC access (proportion of approved HHC hours received) and quality (overall, relational, and clinical quality) for both "nursing" and "aide" (certified nursing assistant/home health aide) care. DMS response was dichotomized (any discrimination vs none). We compared HHC access and quality between those who experienced discrimination and those who did not using the Wilcoxon test.

Results: Of 165 participants who received HHC in the past year, most caregivers (71%) and children (59%) self-identified as White, 20% spoke a non-English language at home, and 75% had public insurance (Table 1). Forty-two percent received nursing care alone, 26% received aide care alone, and 32% received both. The DMS was completed by 149 participants; 72% experienced any discrimination. Experiencing any discrimination was associated with lower HHC access (mean 63.6% vs 77.6%, p=0.025; Table 2), lower overall HHC quality (mean 7.8 vs 8.5, p=0.008), lower nursing relational quality (mean 3.4 vs 3.7, p=0.012) and lower nursing clinical quality (mean 3.3 vs 3.5, p=0.027) (Table 3). DMS was not associated with aide relational or clinical quality scores.

Conclusion(s): In a multi-site cohort of family caregivers of children with complex conditions, DMS was associated with decreased access to and lower overall quality of HHC. DMS also was associated with lower nursing relational and clinical quality. Discrimination may play a role in access to HHC as well as caregiver perception of quality. Further investigation is needed to understand the relationship between total DMS score and HHC access/quality.

Table 1. Association Between Study Population Characteristics and Receipt of Home Healthcare Services
Nursing: private duty nurse, registered nurse or licensed practical nurse
Aide: certified nursing assistant/home health aide

Table 2. Discrimination and Home Healthcare Access and Quality
1. Overall Quality measured on 0-10 scale.
2. Of 102 participants with Nursing Care; Relational and Clinical Quality measured on 0-4 scale.
3. Of 75 participants with Aide Care; Relational and Clinical Quality measured on 0-4 scale.