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Exploring the needs and experiences of palliative home care from the perspectives of patients with advanced cancer in China: a qualitative study

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Abstract

Purpose

The needs and experiences of palliative home care for patients with advanced cancer have received little research attention. We aimed to explore the needs and experiences of palliative home care among patients with advanced cancer in China.

Methods

This qualitative study was conducted using semi-structured interviews with patients with advanced cancer. Participants (n = 15) were recruited from an oncology palliative care unit and a hospice outpatient unit, and were selected using purposive sampling from October 2019 to March 2020. Interviews were audio-recorded, transcribed verbatim, and subjected to thematic analysis. Two researchers coded the interviews independently in NVivo 12 and developed major themes and subthemes by inductive and constant comparison.

Results

Five themes were identified: (1) physical need; (2) psychological experience; (3) spiritual need; (4) social need; and (5) information need. Patients need to manage their symptoms (especially cancer pain), prolong life as long as possible, reconstruct their attitudes to adapt to their roles, be socially supported, be respected, maintain spiritual peace, and obtain more information about illness and home care.

Conclusions

The current palliative home care services are imperfect, and patients face substantial challenges, including physical symptoms, psychological/spiritual distress, and inadequate social support and information. Our findings may provide evidence and a reference for the development of palliative home care in China.

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Acknowledgements

The authors would like to acknowledge Dr. Changrong Yuan (Nursing School, Fudan University, Shanghai, China) for her kind support for this study. The authors also would like to give special thanks to all the participants who generously shared their needs and experiences.

Funding

This study was funded by Shantou University Medical College in Shantou, China (Grant Number: NU201902) and the Li Ka Shing Foundation Cross-Disciplinary Research Grant (Grant Number: 2020LKSFG10B).

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Authors and Affiliations

  1. The First Affiliated Hospital of Shantou University Medical College, Shantou, 515000, People’s Republic of China

    Xiaocheng Liu, Zhili Liu, Ruihua Zheng, Wenyuan Li, Qiudi Chen, Weihua Cao, Ruina Li & Wenjuan Ying

  2. Nursing Department, The First Affiliated Hospital of Shantou University Medical College, Shantou, 515000, People’s Republic of China

    Wenjuan Ying

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  1. Xiaocheng Liu
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  2. Zhili Liu
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  3. Ruihua Zheng
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  7. Ruina Li
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Contributions

Ying WJ and Liu XCh conceived in this qualitative study, and Ying WJ secured funding. Liu ZHL and Zheng RH conducted a review of the literature. Liu XCh, Ying WJ, Liu ZhL, Cao WH, Li WY, and Zheng RH developed the interview guide. Zheng RH, Li WY, Rui N, and Cao WH recruited all the participants and were accountable for all aspects of the interview. Liu XCh conducted the qualitative interviews. The transcription was conducted by Liu XCh and checked by Li WY and Liu XCh. Liu XCh and Chen QD independently coded all interview transcripts. The data were mainly analyzed by Ying WJ, Liu XCh, Liu ZhL, and Chen QD. The results were reviewed and confirmed by all co-authors. Liu XCh and Liu ZhL prepared and drafted the first manuscript. Zheng RH, Li WY, and Ying WJ critically revised the first manuscript for important content. Liu ZhL, Zheng RH, and Li WY reviewed and revised the subsequent version of the manuscript. All co-authors read and approved the final manuscript. Ying WJ submitted the final manuscript.

Corresponding author

Correspondence to Wenjuan Ying.

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Ethical approval involving humans

Approval was obtained from the ethics committee of the First Affiliated Hospital of Shantou University Medical College (protocol number 2019088) and Shantou Longhu People’s Hospital (protocol number LHLL2020005). All procedures implemented in studies involving human participants were in compliance with the institutional and/or national research committees on ethical standards and with the 1964 Helsinki Declaration and its subsequent amendments or similar ethical standards. Written informed consent was acquired from all participants.

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The authors declare no competing interests.

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Liu, X., Liu, Z., Zheng, R. et al. Exploring the needs and experiences of palliative home care from the perspectives of patients with advanced cancer in China: a qualitative study. Support Care Cancer 29, 4949–4956 (2021). https://doi.org/10.1007/s00520-021-06037-8

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