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Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions.

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Title: Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions.
Authors: Amtmann, Dagmar (AUTHOR), Liljenquist, Kendra S. (AUTHOR), Bamer, Alyssa (AUTHOR), Gammaitoni, Arnold R. (AUTHOR), Aron, Carey R. (AUTHOR), Galer, Bradley S. (AUTHOR), Jensen, Mark P. (AUTHOR)
Source: Quality of Life Research. May2020, Vol. 29 Issue 5, p1361-1371. 11p. 5 Charts, 2 Graphs.
Subjects: University of Washington, Burden of care, Item response theory, Childhood epilepsy, Intraclass correlation, Muscular dystrophy
Abstract: Purpose: To develop item response theory (IRT)-based item banks and short forms to measure stress and benefit related to caregiving for children, including children with epilepsy or other serious health conditions.Methods: Items developed with feedback from neurologists and caregivers of children with epilepsy were tested in cognitive interviews and administered to caregivers of children with severe epilepsy (N = 128), down syndrome (N = 143) and muscular dystrophy (N = 129), as well as a community sample of US caregivers (N = 322). IRT was used to analyze the data. Test-retest reliability was assessed using a two-way random effects (2,1) intraclass correlation coefficient (ICC). Validity was assessed by a pattern of correlations with relevant constructs (stress, depression, anxiety, and resilience) and by the pattern of scores by known groups.Results: Caregivers of children with serious health conditions reported more stress and less benefit than the general sample. The final caregiver stress item bank (k = 19) and the caregiver benefit item bank (k = 13) were calibrated using IRT and centered on a sample of community caregivers representative of the US general caregiver population. Short form scores are highly correlated with full bank scores (r ≥ 0.98) and IRT reliability exceed 90% for most levels. Test-retest reliability was high (ICC > 0.92) for banks and short forms.Conclusions: Results provide strong support for reliability and validity of the caregiver stress and benefit scores. Instruments are publicly available, flexible, brief, and provide reliable and valid scores of caregiver stress and benefit of caregivers of children with and without serious health conditions. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions.
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  Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. May2020, Vol. 29 Issue 5, p1361-1371. 11p. 5 Charts, 2 Graphs.
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  Data: <searchLink fieldCode="DE" term="%22University+of+Washington%22">University of Washington</searchLink><br /><searchLink fieldCode="DE" term="%22Burden+of+care%22">Burden of care</searchLink><br /><searchLink fieldCode="DE" term="%22Item+response+theory%22">Item response theory</searchLink><br /><searchLink fieldCode="DE" term="%22Childhood+epilepsy%22">Childhood epilepsy</searchLink><br /><searchLink fieldCode="DE" term="%22Intraclass+correlation%22">Intraclass correlation</searchLink><br /><searchLink fieldCode="DE" term="%22Muscular+dystrophy%22">Muscular dystrophy</searchLink>
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  Data: <bold>Purpose: </bold>To develop item response theory (IRT)-based item banks and short forms to measure stress and benefit related to caregiving for children, including children with epilepsy or other serious health conditions.<bold>Methods: </bold>Items developed with feedback from neurologists and caregivers of children with epilepsy were tested in cognitive interviews and administered to caregivers of children with severe epilepsy (N = 128), down syndrome (N = 143) and muscular dystrophy (N = 129), as well as a community sample of US caregivers (N = 322). IRT was used to analyze the data. Test-retest reliability was assessed using a two-way random effects (2,1) intraclass correlation coefficient (ICC). Validity was assessed by a pattern of correlations with relevant constructs (stress, depression, anxiety, and resilience) and by the pattern of scores by known groups.<bold>Results: </bold>Caregivers of children with serious health conditions reported more stress and less benefit than the general sample. The final caregiver stress item bank (k = 19) and the caregiver benefit item bank (k = 13) were calibrated using IRT and centered on a sample of community caregivers representative of the US general caregiver population. Short form scores are highly correlated with full bank scores (r ≥ 0.98) and IRT reliability exceed 90% for most levels. Test-retest reliability was high (ICC > 0.92) for banks and short forms.<bold>Conclusions: </bold>Results provide strong support for reliability and validity of the caregiver stress and benefit scores. Instruments are publicly available, flexible, brief, and provide reliable and valid scores of caregiver stress and benefit of caregivers of children with and without serious health conditions. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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