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Exploring concepts and trends in informal caregiver burden: systematic review using citation network and content analysis

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Abstract

Background

With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can have a negative impact and increase the burden on caregivers, which is a cause for concern.

Objective

This study aimed to comprehensively depict the concept of “informal caregiver burden” through bibliometric and content analyses.

Methods

We searched the Web of Science (WoS) database to obtain bibliometric data and included only papers published between 2013 and 2022. We used content analysis to extract and identify the core concepts within the text systematically.

Results

Altogether, 934 papers were included in the bibliometric analysis, from which we selected 19 highly impactful papers for content analysis. The results indicate that researchers have focused on exploring the factors that impact informal caregiver burden. Meanwhile, there has been a widespread discussion regarding the caregiver burden among those caring for recipients with specific illnesses, such as dementia, Alzheimer’s disease, and cancer, as these illnesses can contribute to varying levels of burden on informal caregivers. In addition, questionnaires and interviews emerged as the predominant methods for data collection in the realm of informal caregiver research. Furthermore, we identified 26 distinct assessment tools specifically tailored for evaluating burden, such as caregiver strain index (CSI).

Conclusion

For future studies, we suggest considering the intersectionality of factors contributing to the burden on informal caregivers. This approach could enhance the well-being of both caregivers and older care recipients.

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Data availability

All data generated or analyzed during this study are included in this published paper.

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Funding

This research was funded by National Health Research Institutes in Taiwan, grant numbers PH-111-GP-07.

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Authors and Affiliations

  1. Institute of Population Health Sciences, National Health Research Institutes, Miaoli County, 350, Taiwan

    Shuo-Chen Chien, Yu-Hung Chang, Djeane Debora Onthoni, I-Chien Wu, Chih-Cheng Hsu, Hung-Yi Chiou & Ren-Hua Chung

  2. National Center for Geriatrics and Welfare Research, National Health Research Institutes, Yunlin County, 632, Taiwan

    Chia-Ming Yen & Chih-Cheng Hsu

  3. School of Public Health, College of Public Health, Taipei Medical University, Taipei, Taiwan

    Hung-Yi Chiou

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  1. Shuo-Chen Chien
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Contributions

Conceptualization, R-HC, H-YC, C-CH, I-CW, and S-CC; data curation, S-CC and Y-HC; formal analysis, S-CC; funding acquisition, R-HC, H-YC, C-CH, and I-CW; investigation, R-HC, S-CC, and Y-HC; methodology, S-CC, C-MY and DDO; project administration, Y-HC and DDO; resources, S-CC and C-MY; software, S-CC and C-CH; supervision, R-HC; visualization, Y-HC and DDO; writing—original draft, S-CC; writing—review and editing, R-HC, S-CC, Y-HC, C-MY, DDO, I-CW, C-CH, H-YC. All authors have read and agreed to the published version of the manuscript.

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Correspondence to Ren-Hua Chung.

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Chien, SC., Chang, YH., Yen, CM. et al. Exploring concepts and trends in informal caregiver burden: systematic review using citation network and content analysis. Aging Clin Exp Res 35, 2873–2885 (2023). https://doi.org/10.1007/s40520-023-02582-w

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