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  • Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

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Palliative care
Original research
Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies
  1. Shuqin Zhu1,
  2. Hanfei Zhu1,
  3. Xintong Zhang2,
  4. Kouying Liu1,
  5. Zumei Chen3,
  6. Xiaowen Yang4,
  7. Changxian Sun1,5,
  8. Weiping Xie6,7,
  9. Qin Xu1,
  10. Weiying Li8,
  11. Dong Pang9,10,
  12. Yan Cui1,
  13. Hong Wang6,7
  1. 1School of Nursing, Nanjing Medical University, Nanjing, Jiangsu, China
  2. 2Emergency, Nantong First People's Hospital, Nantong, Jiangsu, China
  3. 3China Jiliang University Hospital, Hangzhou, Zhejiang, China
  4. 4Nanjing Medical University Library, Nanjing, Jiangsu, China
  5. 5Jiangsu Vocational Institute of Commerce, Nanjing, Jiangsu, China
  6. 6Department of Respiratory and Critical Care Medicine, Nanjing Medical University, Nanjing, Jiangsu, China
  7. 7Department of Respiratory and Critical Care Medicine, The First Affiliated Hospital of Nanjing Medical University, Nanjing, Jiangsu, China
  8. 8LKS Faculty of Medicine, University of Hong Kong, Hong Kong, China
  9. 9School of Nursing, Peking University, Beijing, China
  10. 10Evidence-Based Nursing: A Joanna Briggs Institute Centre of Excellence, Peking University Health Science Centre, Beijing, China
  1. Correspondence to Dr Hong Wang; hongwang{at}njmu.edu.cn; Professor Yan Cui; cyan_njmu{at}163.com; Professor Qin Xu; qinxu{at}njmu.edu.cn

Abstract

Objective To investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.

Methods A search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.

Results The literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.

Conclusion This study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.

  • palliative care
  • adult palliative care
  • quality in health care

Data availability statement

Data are available on reasonable request. The datasets used and analyzed during the current study are available from the corresponding author or the first author on reasonable request.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2021-051717

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    Data availability statement

    Data are available on reasonable request. The datasets used and analyzed during the current study are available from the corresponding author or the first author on reasonable request.

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    Footnotes

    • SZ and HZ contributed equally.

    • Contributors SZ contributed to the study conception and design, literature search, assessment, data extraction and analysis, manuscript writing and editing. HZ contributed to data extraction and analysis, manuscript writing and editing. XZ was responsible for the literature search and assessment. KL contributed to the study design, literature search and assessment. XY contributed to the contributed to the literature search. ZC contributed to the study conception, design and data extraction. CS was responsible for data analysis and manuscript editing. WX was responsible for data interpretation and manuscript revision. WL was responsible for updating the literature search. DP was responsible for JBI methodological guidance. YC, QX and HW were responsible for the study conception and design, manuscript drafting, and study supervision. SZ was responsible for the overall content as the guarantor. All the authors have reviewed the manuscript.

    • Funding 1. Project 'Studies on Construction of Core Competency Model and Development of Assessment Tool for Nurses of Hospice Care (72004099)' supported by NSFC. 2. Project 'The exploration of trajectories and intervention program of frailty for gastric cancer survivors based on the health ecology theory (82073407)' supported by NSFC. 3. Project 'Comparative study on hospice care mode between China and Canada (2017SJB0295)' supported by Philosophy and Social Science Foundation of universities in Jiangsu Province.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.