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A gap in the data: Defining, identifying, and tracking children with medical complexity in the child welfare system
Joyce Chung1, Peter J Pecora2, Aakanksha Sinha3
1Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States of America.
Insights
Many US child welfare agencies struggle to define and identify medically complex children (CMC). A standardized definition is crucial for improving care and collecting essential population-level data for these vulnerable children.
Area of Science:
- Child Welfare Research
- Pediatric Healthcare Policy
- Public Health Data Systems
Background:
- Approximately 10% of nearly 400,000 children in US foster care are medically complex.
- Population-level data on medically complex children (CMC) within child welfare systems are largely unavailable.
- Understanding how these children are served by the child welfare system is critical for service provision.
Purpose of the Study:
- To investigate how US child welfare agencies define, identify, and track medically complex children (CMC).
- To assess the current data collection and identification practices for CMC within child welfare agencies.
- To identify barriers to tracking CMC within the child welfare population.
Main Methods:
- A survey was administered to child welfare agencies across the US.
- Responses regarding the definition, identification, and tracking of CMC were analyzed.
- Descriptive statistical analysis and qualitative thematic analysis were employed.
Main Results:
- Surveys from 28 states and 2 major cities were analyzed.
- Nearly half of agencies lacked a clear definition for CMC, and existing definitions were often non-standardized.
- Most agencies could not easily identify CMC or access relevant data, citing definitional ambiguity as a barrier.
Conclusions:
- US child welfare agencies frequently lack clear definitions and methods for identifying and tracking medically complex children (CMC).
- This deficiency hinders the ability to tailor care and services to the specific needs of CMC.
- Developing and implementing a standardized definition for CMC within child welfare data systems is recommended to improve data collection and inform policy.
Background:
Among nearly 400,000 children in US foster care, an estimated 10 % are medically complex. Yet, population-level data about children with medical complexity (CMC) served by the child welfare system, both for prevention and foster care services, are largely unavailable.
Objective:
To understand how US child welfare agencies define, identify, and track CMC.
Participants And Setting:
Child welfare agencies across the US.
Methods:
Agencies were recruited to complete a survey as part of a larger study exploring how CMC are served by the child welfare system. Survey responses related to defining, identifying, and tracking CMC were included in analysis. Descriptive statistical analysis was conducted with Stata. Qualitative content and thematic analysis were applied to free text responses.
Results:
Surveys were completed by agencies from 28 states and 2 major cities. Nearly half of the agencies did not have a clear definition to identify CMC; those that did have a definition often lacked standardization. The majority of agencies could not easily identify CMC or access CMC-related data within data systems. Agencies described lack of a clear definition as a barrier to collecting population level data.
Conclusions:
Many US child welfare agencies lack a clear definition to identify and track CMC, impacting the ability to tailor care and service delivery to meet their unique needs. To address this, a clear definition for CMC should be developed and consistently applied within child welfare data systems. Once CMC are identifiable, future research can collect population-level data and provide recommendations for best practices and policies.
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