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Care needs level in long-term care insurance system and family caregivers’ self-perceived time-dependent burden in patients with home palliative care for cancer: a cross-sectional study

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Abstract

Purpose

Although home care improves patients’ quality of life (QOL), several studies have suggested that home care lowers the QOL of family caregivers and decreases their mortality. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified.

Method

A survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients’ care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used.

Results

The time-dependent burden was identified as a major burden. An adjusted model showed a nonlinear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07–2.12), 1.08 (0.43–2.57), 1.87 (1.01–3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden.

Conclusion

The time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.

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Data availability

The data were collected by questionnaire with the approval of the Ethics Committee of Tohoku University.

Code availability

N/A.

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Funding

This study was conducted as specific research of the JHOPE4 study funded by the Japan Hospice Palliative Care Foundation and JSPS KAKENHI Grant Number JP18J225780.

Author information

Authors and Affiliations

  1. Division of Health Science, Osaka University Graduate School of Medicine, 1-7 Yamadaoka, Suita, Osaka, Japan

    Naoko Otsuki

  2. Health and Counseling Center, Osaka University, 1-17 Machikaneyama, Toyonaka, Osaka, 560-0043, Japan

    Ryohei Yamamoto

  3. Department of Nephrology, Osaka University Graduate School of Medicine, 2-2 Yamadaoka, Suita, Osaka, Japan

    Ryohei Yamamoto

  4. Health Promotion and Regulation, Department of Health Promotion Medicine, Osaka University Graduate School of Medicine, 2-2 Yamadaoka, Suita, Osaka, Japan

    Ryohei Yamamoto

  5. Kwansei Gakuin University School of Human Welfare Studies, 1-1-155, Uegahara, Nishinomiya, Japan

    Yukihiro Sakaguchi

  6. Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, 2-1 Seiryo-machi, Aoba-ku, Sendai, Japan

    Kento Masukawa & Mitsunori Miyashita

  7. Division of Palliative and Supportive Care, Seirei Mikatahara Hospital, 3453 Mikatahara, Kita, Hamamatsu, Japan

    Tatsuya Morita

  8. Kobe University Graduate School of Medicine, 7-5-1, Kusunoki-cho, Chuo-ku, Kobe, Japan

    Yoshiyuki Kizawa

  9. Department of Human Health Sciences, Kyoto University Graduate School of Medicine, 53 Kawaharacho, Shogoin, Sakyo-ku, Kyoto, Japan

    Satoru Tsuneto

  10. Department of Palliative Medicine, Tsukuba Medical Center Hospital, 1-3-1, Amakubo, Tsukuba, Ibaraki, Japan

    Yasuo Shima

  11. Tokyo Medical and Dental University Graduate School of Health Care Sciences, 1-5-45, Yushima, Bunkyo-ku, Tokyo, Japan

    Naoko Otsuki & Sakiko Fukui

Authors
  1. Naoko Otsuki
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  2. Ryohei Yamamoto
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  3. Yukihiro Sakaguchi
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  4. Kento Masukawa
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  5. Tatsuya Morita
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  6. Yoshiyuki Kizawa
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  7. Satoru Tsuneto
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  8. Yasuo Shima
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  10. Mitsunori Miyashita
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Contributions

Conceptualization: [N. Otsuki, R. Yamamoto, and Y. Sakaguchi]; methodology: [N. Otsuki and R. Yamamoto]; formal analysis: [N. Otsuki and R. Yamamoto]; investigation: [K. Masukawa, T. Morita, Y. Kizawa, S. Tsuneto, Y. Shima, and M. Miyashita]; writing and preparation of the original draft: [N. Otsuki and R. Yamamoto]; writing, reviewing, and editing: [R. Yamamoto, Y. Sakaguchi, and S. Fukui]; funding acquisition: [N. Otsuki and M. Miyashita], resources: [M. Miyashita]; supervision: [S. Fukui]; and project administration: [M. Miyashita].

Corresponding author

Correspondence to Ryohei Yamamoto.

Ethics declarations

Ethics approval

The study protocol of JHOPE was approved by the ethics committee of Tohoku University Hospital and all participating institutions, and the protocol of the present study was approved by the Osaka University Hospital. All family caregivers gave informed consent to JHOPE4.

Consent for participation and publication

Informed consent was given to all family caregivers for participation in JHOPE4 and possible publication of the results.

Conflict of interest

The authors declare no competing interests.

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Otsuki, N., Yamamoto, R., Sakaguchi, Y. et al. Care needs level in long-term care insurance system and family caregivers’ self-perceived time-dependent burden in patients with home palliative care for cancer: a cross-sectional study. Support Care Cancer 30, 1587–1596 (2022). https://doi.org/10.1007/s00520-021-06579-x

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  • DOI: https://doi.org/10.1007/s00520-021-06579-x

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