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17-04-2024

Understanding caregiver burden from multiple perspectives: dyadic agreement between caregiver and care recipient

Auteurs: Maja Kuharic, Brendan Mulhern, Lisa K. Sharp, Robin S. Turpin, A. Simon Pickard

Gepubliceerd in: Quality of Life Research

Abstract

Purpose

Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients’ and caregivers’ view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver’s view (Proxy-CB).

Methods

Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores.

Results

The average age of caregivers was 49.2 years, and 62.7 years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver’s view, with moderate to substantial agreement across CB domains (from κ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective.

Conclusion

Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information.

Graphical abstract

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Titel: Understanding caregiver burden from multiple perspectives: dyadic agreement between caregiver and care recipient
Auteurs: Maja Kuharic
Brendan Mulhern
Lisa K. Sharp
Robin S. Turpin
A. Simon Pickard
Publicatiedatum: 17-04-2024
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-024-03643-x