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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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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.

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Correspondence to Dagmar Amtmann.

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Conflicts of interest

Research reported was supported by a grant awarded to the University of Washington by Zogenix, Inc., under contract #ZXIIS2015-005.The sponsor played no role in study design, in the collection, and in analysis and interpretation of data, but co-authored the article based on the results.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Washington Institutional Review Board (IRB#50469) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Amtmann, D., Liljenquist, K.S., Bamer, A. et al. Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions. Qual Life Res 29, 1361–1371 (2020). https://doi.org/10.1007/s11136-019-02409-0

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