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Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China

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Abstract

Purpose

Caring for children with acute lymphoblastic leukemia (ALL) is a distressing experience for parents without medical training. The experience can lead to parents’ care burden. This study explored care burden among parents of children with ALL and its related factors.

Methods

A total of 130 parents were surveyed with the Zarit Burden Inventory (ZBI), Perceived Social Support Scale (PSSS), Zung’s Self-rating Anxiety Scale (SAS), Zung’s Self-rating Depression Scale (SDS), Medical Outcome Study Short Form 36 (SF-36), and a study specific demographic information questionnaire. Independent-samples T test, one-way ANOVA, Pearson correlation analysis and multivariate linear regression analysis (stepwise method), and binomial logistic regression were used in data analysis.

Results

The mean score of parents’ care burden overall was 37.74 ± 16.57, 17 (13.08%) had little or no burden, 57 (43.85%) had mild-to-moderate burden, 44 (33.84%) had moderate-to-severe burden, and 12 (9.23%) had severe burden. Regression analyses indicated daily care time, anxiety, general health, average monthly family income, social support, and number of co-caregivers were factors associated with care burden. These variables accounted for 51% of the variance in care burden. Other demographic information of parents and children, depression, and other dimensions of SF-36 were not related to care burden. The severe burden level was associated the increase risk of emotional distress compared with little or no burden group (OR = 37.500, 95% CI = 4.515–311.348, P = 0.001).

Conclusion

The results indicated that care burden in parents of children newly diagnosed with ALL is high. Parents with lower levels of care burden tend to have less daily care time, more co-caregivers, higher income, less anxiety, better general health, and social support. Strategies are needed to help reduce parents’ care burden.

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Acknowledgements

This study was supported by the Science and Technology Commission of Shanghai Municipality, China (No. 12410707900) and National Natural Science Foundation of China (No. 71473262). Thank you for China Scholarship Council supporting Jingting Wang for a 1-year visiting study in Lawrence Bloomberg Faculty of Nursing, University of Toronto from Jan. 2016 to Dec. 2016. This paper was finished with the supervision and help of Dr. Changrong Yuan (Jingting Wang’s host supervisor in the Second Military Medical University) and Dr. Doris Howell (Jingting Wang’s supervisor in the University of Toronto).

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Authors and Affiliations

  1. School of Nursing, Second Military Medical University, 800 Xiangyin Road, Shanghai, 200433, China

    Jingting Wang & Changrong Yuan

  2. Department of Nursing, Shanghai Children’s Medical Center, Shanghai, China

    Nanping Shen

  3. Department of Hematology and Oncology, Shanghai Children’s Medical Center, Shanghai, China

    Xiaoyan Zhang

  4. Department of Hematology, Children’s Hospital of Soochow University, Jiangsu, China

    Min Shen & Anwei Xie

  5. Lawrence Bloomberg Faculty of Nursing, University of Toronto & University Health Network (Princess Margaret Cancer Center), 610 University Avenue, Toronto, ON, M5G 2M9, Canada

    Doris Howell

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  1. Jingting Wang
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  2. Nanping Shen
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  3. Xiaoyan Zhang
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  4. Min Shen
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  5. Anwei Xie
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  7. Changrong Yuan
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Contributions

Changrong Yuan is the principal investigator of this research project who was responsible for the entire study design. Jingting Wang, Nanping Shen, Xiaoyan Zhang, Min Shen, and Anwei Xie conducted the study. Jingting Wang drafted the manuscript. Doris Howell performed critical revisions of the manuscript.

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Correspondence to Doris Howell or Changrong Yuan.

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Wang, J., Shen, N., Zhang, X. et al. Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China. Support Care Cancer 25, 3703–3713 (2017). https://doi.org/10.1007/s00520-017-3796-3

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  • DOI: https://doi.org/10.1007/s00520-017-3796-3

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