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Comparison between Rural and Urban Appalachian Children in Hospice Care
Mary Lou Clark Fornehed1, Radion Svynarenko1, Jessica Keim-Malpass1
1From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia.
Insights
Pediatric hospice care in Appalachia differs significantly between rural and urban children. Rural children face greater medical complexity and poverty, yet receive longer hospice stays with fewer emergency department visits.
Area of Science:
- Pediatric Palliative Care
- Rural Health Disparities
- Appalachian Health Outcomes
Background:
- Appalachian children represent a vulnerable population with unique end-of-life care needs.
- Understanding geographic variations in pediatric hospice care is crucial for equitable service delivery.
Purpose of the Study:
- To compare the characteristics of pediatric hospice patients in rural versus urban areas of Appalachia.
- To identify disparities in medical complexity, socioeconomic factors, and care utilization.
Main Methods:
- Retrospective, nonexperimental study design.
- Analysis of demographic, hospice, and clinical data for children under 21 enrolled in Medicaid hospice.
- Statistical comparisons using Pearson chi-squared and Student's t-tests.
Main Results:
- Rural Appalachian children (40%) were younger, had higher rates of complex chronic conditions, comorbidities, and technology dependence.
- Rural children experienced longer hospice stays (38 vs. 11 days) and less frequent emergency department use.
- Rural children exhibited higher rates of primary care and non-hospice provider visits for symptom management.
Conclusions:
- Pediatric hospice patients in rural Appalachia present with distinct medical and socioeconomic challenges.
- Continuity of care may be improved in rural settings, but fragmentation risks exist.
- Tailored strategies are needed to address the unique end-of-life care needs of Appalachian children.
Objective:
The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia.
Methods:
Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means.
Results:
Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice.
Conclusions:
Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.
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