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

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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.

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Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Acknowledgements

We extend our deepest gratitude to Professor Werner Brouwer for his valuable feedback and expert guidance, which have greatly enhanced the quality of this manuscript.

Funding

This work was supported by grants EQ Project 414-PHD from the EuroQol Research Foundation. The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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Authors and Affiliations

  1. Department of Pharmacy Systems, Outcomes and Policy, College of Pharmacy, University of Illinois, Chicago, IL, USA

    Maja Kuharic & A. Simon Pickard

  2. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N Michigan Ave, Chicago, IL, 60611, USA

    Maja Kuharic

  3. Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, NSW, Australia

    Brendan Mulhern

  4. Department of Biobehavioral Nursing Science, College of Nursing, University of Illinois Chicago, Chicago, IL, USA

    Lisa K. Sharp

  5. Lake Zurich, IL, USA

    Robin S. Turpin

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Contributions

All authors, including Kuharic, Pickard, Mulhern, Sharp, and Turpin played a significant role in the conception and design of the study. The acquisition of data was handled by Kuharic and Pickard, while the analysis was done by Kuharic and the entire team was involved in interpreting the data. Kuharic drafted the first version of the manuscript. Pickard, Mulhern, Sharp, and Turpin provided critical revisions and intellectual contributions. All authors have carefully read, provided feedback on, and approved the final version of the manuscript.

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Correspondence to Maja Kuharic.

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Competing interests

RT and LS declare they have no financial interests. MK has received grants from the EuroQol Research Foundation. ASP and BM have received grants from the EuroQol Research Foundation, and both are members of the EuroQol Group.

Ethical approval

The study was deemed exempt by the Institutional Review Board at the University of Illinois Chicago, under approval number #2022–0490.

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Informed consent was obtained from all individual participants included in the study.

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Kuharic, M., Mulhern, B., Sharp, L.K. et al. Understanding caregiver burden from multiple perspectives: dyadic agreement between caregiver and care recipient. Qual Life Res (2024). https://doi.org/10.1007/s11136-024-03643-x

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