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Barriers to Respite Care for Children with Special Health Care Needs
Genevieve Graaf1, Philip Baiden, George Boyd
1School of Social Work, University of Texas at Arlington, Arlington, TX.
Insights
Cost and availability are major barriers to respite care for children with special health care needs (CSHCN). Families with children experiencing emotional, behavioral, or developmental problems (EBDPs) face more barriers, highlighting the need for improved access to these vital services.
Area of Science:
- Pediatrics
- Health Services Research
- Family Support
Background:
- Children with special health care needs (CSHCN) often require specialized support.
- Respite services are crucial for family well-being but face access challenges.
- Understanding barriers is key to improving service delivery for CSHCN.
Purpose of the Study:
- To estimate the prevalence of 14 specific barriers to respite services for parents of CSHCN.
- To identify characteristics associated with common respite care barriers.
- To analyze barriers for CSHCN with and without emotional, behavioral, or developmental problems (EBDPs).
Main Methods:
- Utilized data from the National Survey of Children with Special Health Care Needs (2005/2006 and 2009/2010).
- Employed descriptive, bivariate, and multivariable logistic regression analyses.
- Examined parent-reported barriers to respite care services.
Main Results:
- Service availability/transportation (23.8%) and cost (19.8%) were the most frequent barriers for CSHCN.
- CSHCN with EBDPs reported significantly more barriers than those without.
- Public health coverage was linked to fewer cost and information barriers.
Conclusions:
- Addressing parent-reported barriers is essential for increasing respite care access for CSHCN.
- Structural and practice-oriented solutions are needed to overcome obstacles.
- Improved understanding of barriers can enhance support for vulnerable families.
Objective:
The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN.
Methods:
Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010.
Results:
Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care.
Conclusion:
Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.
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