Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior.
BACKGROUND
Like most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.


OBJECTIVE
This research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.


METHODS
The data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.


RESULTS
The results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.


CONCLUSIONS
Much of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.
Department of Educational Psychology, Texas A & M University, College Station, TX 77843-4225, USA. cfournier@tamu.edu
Constance J
CJ
Fournier
Matthew J
MJ
Davis
Ashweeta
A
Patnaik
Timothy R
TR
Elliott
James A
JA
Dyer
Emily E
EE
Jasek
Charles D
CD
Phillips
D000203:Activities of Daily Living; D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D008607:Intellectual Disability / Q000534:rehabilitation*; D008297:Male; D008484:Medicaid / Q000706:statistics & numerical data; D001523:Mental Disorders / Q000534:rehabilitation*; D015999:Multivariate Analysis; D002666:Psychology, Child; D012938:Social Perception; D014481:United States; D055815:Young Adult