Email Alert RSS
Volume 13 Issue 1
Jan.  2022
Turn off MathJax
Article Contents
Abstract
References
CAI Siyu, GUO Qiaohong, NING Xiaohong, LU Guijun, GUO Yanru, LIU Yin, QIN Xinyan, WANG Xianjing, YAN Tianyi, WANG Ruixin, ZHOU Xuan, PENG Xiaoxia, Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association. Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES[J]. Medical Journal of Peking Union Medical College Hospital, 2022, 13(1): 96-103. DOI: 10.12290/xhyxzz.2021-0162
Citation: CAI Siyu, GUO Qiaohong, NING Xiaohong, LU Guijun, GUO Yanru, LIU Yin, QIN Xinyan, WANG Xianjing, YAN Tianyi, WANG Ruixin, ZHOU Xuan, PENG Xiaoxia, Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association. Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES[J]. Medical Journal of Peking Union Medical College Hospital, 2022, 13(1): 96-103. DOI: 10.12290/xhyxzz.2021-0162
shu

Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES

  • 1.

    Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics (Capital Medical University), Key Laboratory of Major Diseases in Children, Ministry of Education, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing 100045, China

  • 2.

    School of Nursing, Capital Medical University, Beijing 100069, China

  • 3.

    Department of Geriatrics, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing 100730, China

  • 4.

    Department of Pain, Beijing Tsinghua Changgung Hospital, Beijing 102218, China

  • 5.

    Department of Palliative Care, Cangzhou People's Hospital, Cangzhou, Hebei 061000, China

  • 6.

    Department of Geriatrics (Palliative Care), Beijing Royal Integrative Medicine Hospital, Beijing 102209, China

  • 7.

    Internal Medicine Department, Beijing United Family Hospital, Beijing 100015, China

  • 8.

    Department of Hematology, The Third People's Hospital of Zhengzhou, Zhengzhou 450000, China

  • 9.

    Centre for the Humanities and Medicine, The University of Hong Kong, Hong Kong 999077, China

  • 10.

    Hematology Center, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics (Capital Medical University), Key Laboratory of Major Diseases in Children, Ministry of Education, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing 100045, China

Funds: 

Children's Medicine Research Project of Beijing Children's Hospital, Capital Medical University YZQN202001

The Special Fund of the Pediatric Medical Coordinated Development Center of Beijing Municipal Administration of Hospitals XTCX201812

Management Research Project of Beijing Children's Hospital, Capital Medical University YGLQ202001

Cultivation Fund Project of the National Natural Science Foundation in Capital Medical University PYZ20043

More Information
  • Corresponding author:

    ZHOU Xuan, E-mail: bchppc@163.com

    PENG Xiaoxia, E-mail: pengxiaoxia@bch.com.cn

  • Received Date: February 03, 2021
  • Accepted Date: June 02, 2021
  • Available Online: August 22, 2021
  • Issue Publish Date: January 29, 2022
    Graphical Abstract
    • Abstract
  •   Objective  To describe the cross-cultural adaptation of the document of advance care planning (ACP) Voicing My CHOiCESTM in Chinese, and provide the basis for the practice of ACP in China.
      Methods  The process of cross-cultural adaptation involved document translation and synthesis, evaluation of healthcare providers, evaluation of patients, back translation, author revision of the original document, and finalization. The participants were all kinds of healthcare providers involved in ACP practice, including doctors, nurses, social workers, psychologists, hospice volunteers, anesthesiologists, nutritionists, and pharmacists. The heathcare providers were invited to answer a questionnaire about the document's structure, importance, appropriateness, and level of language localization. The evaluation of healthcare providers included three rounds of the process. We revised the document based on the feedback and developed the first draft. The first draft of the document was reviewed by young patients with fatal diseases and their families. They read each page of the document and rated the perceived appropriateness, helpfulness, and stressfulness of each item. After further revision, the final document was formed.
      Results  Due to the differences in language, culture, health, and legal system between China and the United States, the cross-cultural adaptations were made in some topics of the document. The Chinese version of the document included 13 topics, involving medical and nursing decision-making, daily life planning, funeral planning, and spiritual support, etc. In total, 91.67% of the patients and 80% of their parents considered all topics covered to be appropriate for age and culture. In total, 75% of patients and 70% of their parents found all the topics to be helpful. In the evaluation of stress, death-related topics brought pressure on patients.
      Conclusions  The Chinese version of Voicing My CHOiCESTM is the first ACP document applicable to adolescents and young adults in China. This document can help young Chinese patients to think and express their wishes and preferences, and guide patients, family members, and healthcare providers to fully and deeply communicate with each other about future planning.
    • FullText(HTML)
    • References (22)
  • [1]
    Rietjens JAC, Sudore RL, Connolly M, et al. European Association for Palliative Care. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care[J]. Lancet Oncol, 2017, 18: e543-e551. DOI: 10.1016/S1470-2045(17)30582-X
    [2]
    Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial[J]. BMJ, 2010, 340: c1345. DOI: 10.1136/bmj.c1345
    [3]
    Lotz JD, Jox RJ, Borasio GD, et al. Pediatric advance care planning: a systematic review[J]. Pediatrics, 2013, 13: e873-e880. http://pdfs.semanticscholar.org/9efb/83eea79d11cc381435f55bb48bfe41228a9e.pdf
    [4]
    罗峪平, 倪晓红, 王博, 等. 生前预嘱推广: 实践与建议[J]. 医学与哲学, 2020, 41: 1-7. https://www.cnki.com.cn/Article/CJFDTOTAL-YXZX202022001.htm

    Luo YP, Ni XH, Wang B, et al. Promotion of living will: Practice and suggestions[J]. Yixue Yu Zhexue, 2020, 41: 1-7. https://www.cnki.com.cn/Article/CJFDTOTAL-YXZX202022001.htm
    [5]
    Wiener L, Ballard E, Brennan T, et al. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations[J]. J Palliat Med, 2008, 11: 1309-1313. DOI: 10.1089/jpm.2008.0126
    [6]
    Pao M, Mahoney MR. "Will You Remember Me?": Talking with Adolescents About Death and Dying[J]. Child Adolesc Psychiatr Clin N Am, 2018, 27: 511-526. DOI: 10.1016/j.chc.2018.05.001
    [7]
    Wiener L, Zadeh S, Battles H, et al. Allowing adolescents and young adults to plan their end-of-life care[J]. Pediatrics, 2012, 130: 897-905. DOI: 10.1542/peds.2012-0663
    [8]
    Zadeh S, Pao M, Wiener L. Opening end-of-life discus-sions: how to introduce Voicing My CHOiCESTM, an advance care planning guide for adolescents and young adults[J]. Palliat Support Care, 2015, 13: 591-599. DOI: 10.1017/S1478951514000054
    [9]
    de Arruda-Colli MNF, Sansom-Daly U, Dos Santos MA, et al. Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer[J]. Clin Pract Pediatr Psychol, 2018, 6: 341-354. DOI: 10.1037/cpp0000254
    [10]
    Sarafis P, Tsounis A, Malliarou M, et al. Disclosing the truth: a dilemma between instilling hope and respecting patient autonomy in everyday clinical practice[J]. Glob J Health Sci, 2013, 6: 128-137. http://pdfs.semanticscholar.org/79a2/ceb40dec172d63ba51fd493b4aa9800b0e57.pdf
    [11]
    Dutta O, Lall P, Patinadan PV, et al. Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals[J]. Palliat Support Care, 2020, 18: 425-430. DOI: 10.1017/S1478951519000865
    [12]
    张洪松, 杨立丽. 癌症病情告知的家庭主义模式[J]. 医学与哲学, 2020, 41: 17-19, 33. https://www.cnki.com.cn/Article/CJFDTOTAL-YXZX202009007.htm

    Zhang HS, Yang LL. Family model of cancer condition notification[J]. Yixue Yu Zhexue, 2020, 41: 17-19, 33. https://www.cnki.com.cn/Article/CJFDTOTAL-YXZX202009007.htm
    [13]
    Zhang J, Yang D, Deng Y, et al. The willingness and actual situation of Chinese cancer patients and their family members participating in medical decision-making[J]. Psychooncology, 2015, 24: 1663-1669. DOI: 10.1002/pon.3835
    [14]
    Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference[J]. J Palliat Med, 2009, 12: 885-904. DOI: 10.1089/jpm.2009.0142
    [15]
    Best M, Butow P, Olver I. The doctor's role in helping dying patients with cancer achieve peace: a qualitative study[J]. Palliat Med, 2014, 28: 1139-1945. DOI: 10.1177/0269216314536455
    [16]
    Lalani N, Duggleby W, Olson J. Spirituality among family caregivers in palliative care: an integrative literature review[J]. Int J Palliat Nurs, 2018, 24: 80-91. DOI: 10.12968/ijpn.2018.24.2.80
    [17]
    吴俊. 论宗教信仰与宗教行为的分离——以"中国汉民族宗教体验调查"为例[J]. 世界宗教研究, 2008, 4: 118-127. DOI: 10.3969/j.issn.1000-4289.2008.04.014

    Wu J. On the separation of religious belief and religious behavior--Taking the "survey of religious experience of Chinese Han nationality" as an example[J]. Shijie Zongjiao Yanjiu, 2008, 4: 118-127. DOI: 10.3969/j.issn.1000-4289.2008.04.014
    [18]
    Cai S, Guo Q, Luo Y, et al. Spiritual needs and communicating about death in nonreligious theistic families in pedia-tric palliative care: A qualitative study[J]. Palliat Med, 2020, 34: 533-540. DOI: 10.1177/0269216319896747
    [19]
    Yick AG, Gupta R. Chinese cultural dimensions of death, dying, and bereavement: focus group findings[J]. J Cult Divers, 2002, 9: 32-42. http://europepmc.org/abstract/MED/12226932
    [20]
    Martinson IM. Funeral rituals in Taiwan and Korea[J]. Oncol Nurs Forum, 1998, 25: 1756-1760.
    [21]
    吴洁. 儒家孝道思想视角下现代家庭养老对策研究[J]. 邢台学院学报, 2020, 35: 9-14. https://www.cnki.com.cn/Article/CJFDTOTAL-XTSF202004003.htm

    Wu J. Research on modern family pension countermeasures from the perspective of Confucian filial piety[J]. Xingtai Xueyuan Xuebao, 2020, 35: 9-14. https://www.cnki.com.cn/Article/CJFDTOTAL-XTSF202004003.htm
    [22]
    Zhang H. Who will care for our parents? Changing bound-aries of family and public roles in providing care for the aged in urban China[J]. Care Manag J, 2007, 8: 39-46. DOI: 10.1891/152109807780494087
    • Related Articles

  • Cited by

    Periodical cited type(12)

    1. 吕婷婷，张慧琳，袁睆，郝迎春，黄玉婷，刘亮，邹颖. 青少年与年轻成人癌症患者预立医疗照护计划干预方案构建. 护理学杂志. 2024(01): 6-11 .
    2. 曾沫，万凌敏，卢德花，江夏颖. 预立安宁整合照护计划对晚期癌症患者生命意义及家属生活质量的影响. 中国当代医药. 2024(02): 170-174 .
    3. 蔡思雨，郭巧红，王瑞欣，周翾. 儿童安宁疗护共同决策的本土化临床实践. 医学与哲学. 2024(12): 34-38 .
    4. 蔡思雨，周翾，成磊，王瑞欣，彭晓霞. 儿科安宁疗护中共同决策的阻碍因素与应对策略的定性研究. 护理学杂志. 2024(20): 35-40 .
    5. 舒晓，杨良琴，杨子敬，周玉兰，张琪，陈茜. 视频决策辅助在预立医疗照护计划中的应用进展. 中华现代护理杂志. 2023(04): 557-560 .
    6. 黄婕，蔡思雨. 儿童安宁疗护营养管理专家建议. 中国小儿血液与肿瘤杂志. 2023(04): 209-216 .
    7. 王丽，周芙玲，邹会静，杨冰香，罗丹，王晓琴，刘茜. 在青少年中实施预立医疗照护计划的研究进展. 中国护理管理. 2023(08): 1272-1276 .
    8. 张璐，黄月霖，伍晓琴，杨婷，陈佳增，傅静. 以家庭为中心的儿科预立医疗照护计划研究进展. 中国护理管理. 2023(08): 1233-1238 .
    9. 李凡，解超英，李程娟，谢建平，廖慧. 艾滋病患者对预立医疗照护计划认知的质性研究. 当代护士(上旬刊). 2023(12): 122-126 .
    10. 成磊，翟晓文，周翾. 儿童舒缓疗护整合模式的介绍及启示. 医学与哲学. 2023(21): 27-29 .
    11. 张婧一，刘梅洁，王雨，王岳. 未成年人安宁疗护程序规范建议. 中国医学伦理学. 2022(10): 1157-1170 .
    12. 王瑞欣，蔡思雨，周翾. 42例生命终末期血液肿瘤患儿在临终关怀治疗中症状分析. 中国小儿血液与肿瘤杂志. 2022(05): 326-330 .

    Other cited types(1)

Catalog

    Get Citation
    PDF
    XML

    Article Metrics

    Article views (1004) PDF downloads (78) Cited by(13)
    Related
    Links: National Health Commission of the People's Republic of China Chinese Academy of Medical Sciences(CAMS) AMLC Check CNKI Database CNKI Term Online Chinese General Practice
    Address：Room 302,Third Floor,Building 7, No. 1 Shuaifuyuan, Wangfujing, Dongcheng District, Beijing 100730, China
    Tel：010-69154261/4262
    E - mail：medj@pumch.cn mjpumch@126.com
    Copyright of website：Editorial Office of Medical Journal of Peking Union Medical College Hospital

    Supported by: Beijing Renhe Information Technology Co., Ltd.  Baidu Analytics

    /

    DownLoad:  Full-Size Img  PowerPoint
    Return
    Return
    x Close Forever Close