社会工作与管理 ›› 2025, Vol. 25 ›› Issue (5): 1-14,22.

• 社会工作 •    下一篇

老年癌症患者成年子女照护经历:基于中美两国质性研究的系统评价和Meta整合

何龙韬1, 彭华民2   

  1. 1. 西南财经大学社会发展研究院,四川 成都,611130;
    2. 南京大学社会学院,江苏 南京,210023
  • 收稿日期:2024-09-16 出版日期:2025-09-15 发布日期:2025-09-15
  • 通讯作者: 彭华民(1957— ),女,汉族,教授,博士;主要研究方向:社会福利,社会工作;Email:penghm@nju.edu.cn。 E-mail:penghm@nju.edu.cn
  • 作者简介:何龙韬(1986—  ),男,汉族,副教授,博士;主要研究方向:定性社会医学,中国儒家伦理,循证社会医学,医务社会工作。
  • 基金资助:
    国家社会科学基金后期资助重点项目“人口老龄化背景下的临终关怀社会工作研究”(23FSHA002);四川省哲学社会科学基金后期资助项目“构建中国安宁疗护社会工作实证与循证实践框架研究”(SCJJ23HO37);中央高校基本科研业务费年度培育项目“中国传统文化融入老年人临终关怀社会工作本土路径研究”(JBK2406119)。

The Caregiving Experiences of Cancer Patients’ Family Caregivers: Based on the Qualitative Meta-Synthesis of Chinese and American Qualitative Studies

HE Longtao1, PENG Huamin2   

  1. 1. Research Institute of Social Development, Southwestern University of Finance and Economics, Chengdu, Sichuan, 611130, China;
    2. Department of Social Work and Social Policy, Nanjing University, Nanjing, Jiangsu, 210023, China
  • Received:2024-09-16 Online:2025-09-15 Published:2025-09-15

摘要: 质性Meta整合方法能够更全面、更深入地了解不同文化语境中家庭照护者的共性与异质性经历,从而为中国构建支持家庭照护者群体的社会工作介入框架提供比较层面的实证支持。文章运用质性Meta整合方法,最终纳入关于中美两国老年癌症患者成年子女家庭照护者照护经历的文献32篇(关于中国照护者的文献19篇、关于美国照护者的文献13篇),整合了负性体验、适应与积极体验、既有支持、照护需求四个共性的一级主题,以及若干二级和三级主题。研究发现,影响中美两国老年癌症患者成年子女照护经历异质性的元素主要体现在二级和三级主题层面,与之相关的四个主要结构因素为与癌症和照护相关的文化、专业医疗服务系统、就业保障与医疗保险体系、信仰体系。建议社会工作者从个体支持、本土文化语境、医疗体系整合及政策倡导四个维度入手,为中国照护者提供全面支持。

关键词: 癌症, 老年人, 家庭照护者, 质性Meta整合

Abstract: Population aging and the increasing cancer rates in both China and the United States have drawn significant scholarly attention to the caregiving issues in cancer patients’ families. However, few research has synthesized and compared the caregiving experiences of cancer patients’ family members in these two countries. Qualitative Meta-Synthesis is suitable to examine the homogeneity and heterogeneity of family caregiving experiences in the two countries, providing empirical data to construct a comprehensive support system for family caregivers in China. Adopting Qualitative Meta-Synthesis method, this study includes 32 relevant studies: 19 focusing Chinese family caregivers, 13 on American family caregivers. Four primary themes are identified, that includes negative experience, positive experience, existing support, care needs, each with various secondary and tertiary themes. The diversity of caregiving experiences in the two countries is highlighted through these secondary and tertiary themes. We have also identified four main structural elements contributing to this heterogeneity: cultural factors related to cancer and caregiving, healthcare systems, employment security, health insurance systems, and belief systems.

Key words: cancer, elders, family caregivers, Qualitative Meta-Synthesis

中图分类号: 

  • C916
[1] INTERNATIONAL AGENCY FOR RESEARCH ON CANCER. Globocan 2020 population fact sheet[EB/OL]. [2024-02-04]. https://gco.iarc.fr/today/fact-sheets-populations.
[2] THE NATIONAL ALLIANCE FOR CAREGIVING & AARP PUBLIC POLICY INSTITUTE. Caregiving in the United States 2020[EB/OL]. [2024-05-14]. https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf.
[3] HE L. Care work, migrant peasant families and discourse of filial piety in China[M]. New York: Springer Nature, 2021.
[4] FERRELL B KRAVITZ K, BORNEMAN T, et al. Family caregivers: a qualitative study to better understand the quality-of-life concerns and needs of this population[J]. Clinical journal of oncology nursing, 2018, 22(3): 286-294.
[5] 杨敏, 郑小泉, 蔡元晖. 前列腺癌患者子女照护体验的质性研究[J]. 解放军护理杂志, 2014(12): 13-15,19.
[6] WELLS J N, CAGLE C S, BRADLEY P, et al. Voices of Mexican American caregivers for family members with cancer: on becoming stronger[J]. Journal of transcultural nursing, 2008, 19(3): 223-233.
[7] CENTER FOR RETIREMENT RESEARCH AT BOSTON COLLEGE. How much long-term care do adult children provide?[EB/OL]. [2024-08-10]. https://crr.bc.edu/briefs/how-much-long-term-care-do-adult-children-provide/.
[8] 国家医疗保障局. 2021年全国医疗保障事业发展统计公报[EB/OL]. (2021-06-08).http://www.nhsa.gov.cn/art/2021/6/8/art_7_5232.html.
[9] 吴洪寒, 周宁, 陈湘玉, 等. 终末期癌症安宁疗护患者照顾者照护负担与需求的质性研究[J]. 中国医学伦理学, 2019 (12): 1566-1570.
[10] BREWSTER G S, EPPS F, DYE C E, et al. The effect of the “Great Village” on psychological outcomes, burden, and mastery in African American caregivers of persons living with dementia[J]. Journal of applied gerontology, 2020, 39(10): 1059-1068.
[11] WILLIAMS A, BAKITAS M. Cancer family caregivers: a new direction for interventions[J]. Journal of palliative medicine, 2012, 15(7): 775-783.
[12] 孙荣, 郑瑞双, 董凤齐, 等. 晚期癌症患者子女践行孝道体验的质性研究[J]. 中国实用护理杂志, 2019(24): 1902-1907.
[13] ROLLAND J S. Cancer and the family: an integrative model[J]. Cancer, 2005: 2584-2595. doi: 10.1002/cncr.21489.
[14] RITCHWOOD T D, POWELL T W, METZGER I W, et al. Understanding the relationship between religiosity and caregiver-adolescent communication about sex within African-American families[J]. Journal of child and family studies, 2017, 26(11): 2979-2989.
[15] 唐钧. 中国传统文化中的长期照护思想[J]. 湖南社会科学, 2021(6): 101-107.
[16] PUBLIC RELIGION RESEARCH INSTITUTE. The 2020 census of American religion[EB/OL]. [2024-09-25]. https://www.prri.org/research/2020-census-of-american-religion/.
[17] 翟学伟. “孝”之道的社会学探索[J]. 社会, 2019 (5): 127-161.
[18] HE L, VAN HEUGTEN K. Chinese migrant workers’ care experiences: a model of the mediating roles of filial piety[J]. Qualitative health research, 2020, 30(11): 1-13.
[19] 何龙韬, 吴汉. 中国癌症患者家庭照护者照护经历的质性Meta整合[J]. 中国全科医学, 2022(4): 416-423.
[20] MARSHALL V. Benefits of hospice and palliative care certification[J]. Home healthcare nurse, 2009, 27(8): 463-467.
[21] 中华人民共和国国家卫生健康委员会. 2020年度国家老龄事业发展公报[EB/OL].[2024-08-20]. http://www.nhc.gov.cn/cms-search/xxgk/getManuscriptXxgk.htm?id=c794a6b1a2084964a7ef45f69bef5423.
[22] NATIONAL CANCER INSTITUTE. How much do Americans know about palliative care[EB/OL]. [2024-10-01]. https://hints.cancer.gov/docs/Briefs/HINTS_Brief_41.pdf.
[23] 郑欣瑜, 潘舒恒, 陈伟强, 等. 居民对安宁疗护的认知现状及选择意愿调查[J]. 中国医学伦理学, 2021(8): 1003-1009.
[24] FUNK L M. Caregiver Identity[M]//GU D, DUPRE M. Encyclopedia of gerontology and population aging. Cham: Springer International Publishing,2019.
[25] HAWKEN T, TURNER-COBB J, BARNETT J. Coping and adjustment in caregivers: a systematic review[J]. Health psychology open, 2018,5(2): 1-10.
[26] GÉRAIN P, ZECH E. Informal caregiver burnout? development of a theoretical framework to understand the impact of caregiving.[J] Frontiers in psychology, 2019, 10: 1-13.
[27] VAN HOUTVEN C H, VOILS C I, WEINBERGER M. An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts[J]. BMC geriatrics, 2011, 11, 1-18.
[28] 邓志坚, 陈相应, 杨柳, 等. 癌症患者及家属参与预立医疗照护计划体验质性研究的Meta整合[J]. 中华护理杂志, 2020(12): 1864-1870.
[29] ZHU S, ZHU H, ZHANG X, et al. 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[J]. BMJ open, 2021, 11(11): 1-13.
[30] 王励飞, 孔骞, 米元元, 等. 晚期癌症患者照顾者心理体验质性研究的Meta整合[J]. 中华护理杂志, 2020(6): 856-861.
[31] LIPPIETT K A, RICHARDSON A, MYALL M, et al. Patients and informal caregivers’ experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research[J]. BMJ open, 2019, 9(2): 1-17.
[32] MAGANA I, MARTINEZ P, LOYOLA M. Health outcomes of unpaid caregivers in low- and middle-income countries: a systematic review and meta-analysis[J]. Journal of clinical nursing, 2020, 29(21-22): 3950-3965.
[33] 张晓天, 邱雨, 岳鹏, 等. 子女照护临终患者体验的Meta整合[J]. 护理学报, 2021(18): 28-34.
[34] JOANNA BRIGGS INSTITUTE. Checklist for qualitative research[EB/OL]. [2024-09-20]. https://jbi.global/sites/default/files/2021-03/Checklist_for_Qualitative_Research.docx.
[35] BRAUN V, CLARKE V. One size fits all? what counts as quality practice in (reflexive) thematic analysis?[J]. Qualitative research in psychology, 2020, 18(3): 328-352.
[36] MOHER D, LIBERATI A, TETZLAFF J, et al, Preferred reporting items for systematic reviews and meta-analyses: the prisma statement[J]. Plos medicine, 2009, 6(7): 1-6.
[37] 许君, 叶文琴, 江萍. 晚期癌症患者照顾者照护现状和需求的质性研究[J]. 解放军护理杂志, 2014 (22): 1-4.
[38] 张金梅, 陈慧, 奚秋晨, 等. 肺癌晚期患者家庭照顾者人文关怀体验与需求的质性研究[J]. 中华现代护理杂志, 2015 (33): 4049-4051.
[39] 张彦, 周谊霞, 田利, 等. 苏州市某医院肺癌晚期患者家庭照顾者负担体验的质性研究[J]. 医学与社会, 2017(12): 36-38.
[40] 智晓旭, 周立. 晚期肺癌患者家庭照顾者负担体验的质性研究[J]. 护理学杂志, 2012 (23): 18-20.
[41] CAGLE C S, WOLFF E. Blending voices of Mexican American cancer caregivers and healthcare providers to improve care[J]. Oncology nursing forum, 2009, 36(5): 555-562.
[42] HAOZOUS E, DOORENBOS A, ALVORD L A, et al. Cancer journey for American Indians and Alaska Natives in the Pacific Northwest[J]. Oncology nursing forum, 2016, 43(5): 625-635.
[43] MCDONNELL K K, OWENS O L, MESSIAS D K H, et al. Health behavior changes in African American family members facing lung cancer: tensions and compromises[J]. European journal of oncology nursing, 2019, 38: 57-64.
[44] PETRIN K, BOWEN D J, ALFANO C M, et al. Adjusting to pancreatic cancer: perspectives from first-degree relatives[J]. Palliative and supportive care, 2009, 7(3): 281-288.
[45] SOROKA J T, FROGGATT K, MORRIS S. Family caregivers’ confidence caring for relatives in hospice care at home: an exploratory qualitative study[J]. American journal of hospice and palliative medicine, 2018, 35(12): 1540-1546.
[46] WATERS A R, GREN L H, ROGERS C R, et al. Qualitative inquiry of cancer caregiving during young adulthood: responsibilities, challenges, teamwork, and social support[J]. Journal of psychosocial oncology research and practice, 2021, 3(4): 1-19.
[47] STERBA K R, BURRIS J L, HEINEY S P. We both just trusted and leaned on the lord: a qualitative study of religiousness and spirituality among African American breast cancer survivors and their caregivers[J]. Quality of life research, 2014, 23(7): 1909-1920.
[48] SHERMAN D W, MCGUIRE D B, FREE D, et al. A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer: using a mixed methods approach[J]. Journal of pain and symptom management, 2014, 48(3): 385-399.
[49] 陈李妍, 杨智慧, 李瑞娜, 等. 宁养模式下居家临终癌症患者家庭照顾者积极体验的质性研究[J]. 解放军护理杂志, 2019 (6): 12-14.
[50] 崔菡斐, 乔娟, 魏婧雯, 等. 晚期癌症患者子女行孝动机及行孝体验的质性研究[J]. 护理学报, 2021 (24): 57-62.
[51] 付成琴, 权明桃, 吴华炼, 等. ICU临终病人家属需求的质性研究[J]. 全科护理, 2017 (14): 1680-1683.
[52] 高明霞, 朱丽娅, 宋欢, 等. 上消化道肿瘤术后出院患者主要照顾者照护体验的质性研究[J]. 解放军护理杂志, 2017 (7): 18-21.
[53] 郭艳, 范慧芳, 张淑青. 恶性血液病患者照顾者支持性需求的质性研究[J]. 中国卫生产业, 2019 (12): 170-172.
[54] 梁昌兰, 张晓艳. 鼻咽癌调强放疗病人照顾者照护体验的质性研究[J]. 名医, 2019(9): 210.
[55] 刘晓惠, 王凌云, 赵洁, 等. 社区晚期癌症患者家属身心副反应的质性研究[J]. 中国全科医学, 2015 (28): 3505-3508.
[56] 王宝莲, 庞书勤, 吴异兰, 等. 老年临终患者家属照护需求的质性研究[J]. 解放军护理杂志, 2016 (23): 11-14,19.
[57] 武曌, 管启云, 高婧勃. 住院高龄患者亲属照护者真实体验的质性研究[J]. 解放军护理杂志, 2016 (7): 12-15.
[58] 张雪莲, 山慈明, 张俊娟. 骨肉瘤病人家属照顾负荷的质性研究[J]. 护理研究, 2013 (8): 2465-2466.
[59] WONG M S, CHAN S W C. The experiences of Chinese family members of terminally Ill patients-a qualitative study[J]. Journal of clinical nursing, 2007, 16(12): 2357-2364.
[60] CARRION I V, NEDJAT-HAIEM F R. Caregiving for older latinos at end of life: perspectives from paid and family (unpaid) caregivers[J]. American journal of hospice and palliative medicine, 2013, 30(2): 183-191.
[61] NOLAN M T, HODGIN M B, OLSEN S J, et al. Spiritual issues of family members in a pancreatic cancer chat room[J]. Oncology nursing forum, 2006, 33(2): 239-244.
[62] LYU Q Y, WONG F K Y, YOU L M, et al. Unmet family needs concerning healthcare services in the setting of childhood hospitalization for cancer treatment in mainland China: a qualitative study[J]. Journal of pediatric nursing, 2019, 44: e66-e71.
[63] ZHENG X, LIU Q, TAO Z, et al. Caregivers’ experiences of caring for non-COVID-19 patients during the pandemic: a qualitative systematic review[J]. Patient education and counseling, 2023, 115, 1-10.
[64] ZHANG Y, CUI C, WANG Y, et al. Effects of stigma, hope and social support on quality of life among chinese patients diagnosed with oral cancer: a cross-sectional study[J]. Health and quality of life outcomes, 2020, 18: 1-8.
[65] SEN H E, COLUCCI L, BROWNE D T. Keeping the faith: religion, positive coping, and mental health of caregivers during COVID-19[J]. Frontiers in psychology, 2022, 12: 1-9.
[66] MUCCI L A, HJELMBORG J B, HARRIS J R, et al. Familial risk and heritability of cancer among twins in Nordic countries[J]. Jama, 2016, 315(1): 68-76.
[67] 冯林森, 董正娇, 涂长玲, 等. 昆明市部分大学生对癌症的认知态度及影响因素分析[J]. 中国健康教育, 2021 (4): 367-371.
[68] 翟学伟. 耻感与面子: 差之毫厘, 失之千里[J]. 社会学研究, 2016(1): 1-25, 242.
[69] 谭溪. 福利体制中的家庭主义: 概念、内涵与争论[J]. 宁夏社会科学, 2020(6): 57-66.
[70] 中国护士数量缺口达几百万 薪酬低导致留不住人[EB/OL]. (2016-05-20). http://www.xinhuanet.com/politics/2016-05/20/c_129000825.htm?utm_source=chatgpt.com.
[71] U. S. CENSUS BUREAU. American community survey-selected social characteristics in The United States[EB/OL]. [2024-09-21]. https://data.census.gov/cedsci/table?tid=ACSDP5Y2019.DP02.
[72] 教育部. 2020年中国语言文字事业和语言生活状况[EB/OL] (2021-06-03). http://www.moe.gov.cn/fbh/live/2021/53486/mtbd/202106/t20210603_535283.html.
[73] U. S. BUREAU OF LABOR STATISTICS. Employment situation summary[EB/OL]. [2024-07-08]. https://www.bls.gov/news.release/empsit.b.htm.
[74] 国家统计局. 2021年国民经济持续恢复发展预期目标较好完成[EB/OL]. (2022-01-17). http://www.stats.gov.cn/tjsj/zxfb/202201/t20220117_1826404.html.
[75] 谢立黎, 安瑞霞, 汪斌. 发达国家老年照护体系的比较分析——以美国、日本、德国为例[J]. 社会建设, 2019 (4): 32-40.
[76] 何平, 冯强. 我国子女护理假制度完善路径探析[J]. 人口与社会, 2021 (3): 22-34.
[77] KAISER FAMILY FOUNDATION. 2020 employer health benefits survey[EB/OL]. [2024-10-02]. https://www.kff.org/report-section/ehbs-2020-summary-of-findings/#figurea.
[78] KAISER FAMILY FOUNDATION. Health insurance coverage of the total population[EB/OL].[2024-10-02]. https://www.kff.org/other/state-indicator/total-population/.
[79] 国家医保局 人力资源社会保障部印发2021年版国家医保药品目录[EB/OL]. (2021-12-03). http://www.nhsa.gov.cn/art/2021/12/3/art_14_7430.html.
[80] WANG Y, CASTELLI A, CAO Q, et al. Assessing the design of China’s complex health system-concerns on equity and efficiency[J]. Health policy open, 2020, 1: 1-8.
[81] CHENG M, YANG H, YU Q. Impact of informal caregiving on caregivers’ subjective well-being in China: a longitudinal study[J]. Archives of public health, 2023, 81(1): 1-11.
[82] KOUMOUTZIS A, MEHRI N. The impact of caregiving intensity and religiosity on spousal caregivers’ health and mortality in th US (2004–2014)[J]. Journal of aging and health, 2022, 34(4-5): 640-652
[83] 成琴琴, 梁赛, 谌永毅, 等. 癌症患者灵性需求的研究进展[J]. 中华护理杂志, 2016(3): 330-335.
[1] 何继新, 高文静. 外部约束与内生动力:低龄老年人参与基层治理共同体建设的阻碍问题研究[J]. 社会工作与管理, 2025, 25(5): 65-73.
[2] 武小龙, 王心悦. 乡村老年人数字鸿沟的“针灸理念”介入机理与实践逻辑[J]. 社会工作与管理, 2024, 24(5): 31-39,63.
[3] 庄凌治, 张晨. “生命最后一公里”的选择:影响老年人安宁疗护需求与接受度相关因素的Meta分析[J]. 社会工作与管理, 2024, 24(4): 31-40.
[4] 姚红, 张艺馨, 陈丽云. 人生进程破坏或建设:妇科癌症幸存者的婚育决策过程研究[J]. 社会工作与管理, 2024, 24(2): 43-51,86.
[5] 尚子娟, 王书琪. 数字社会对老年人健康状况的影响研究[J]. 社会工作与管理, 2023, 23(5): 26-36.
[6] 刘勇, 丁霜, 曾阅. 老年人数字鸿沟生成的扎根理论研究[J]. 社会工作与管理, 2022, 22(3): 64-72.
[7] 杨薇, 陈文华, 郑广怀. 1990—2020年我国国家与专业之间关系的演变:以老年人照顾社会工作为例[J]. 社会工作与管理, 2022, 22(2): 35-42.
[8] 尹银, 张琳. 金融社会工作为老服务:老年人的金融服务需求与应对[J]. 社会工作与管理, 2020, 20(2): 24-31.
[9] 秦永超. 家庭代际互惠视角下农村老年人福祉提升研究[J]. 社会工作与管理, 2019, 19(5): 46-51.
[10] 彭小兵, 陈玲丽. 搭建社会支持网络:城市老人集聚区人群的精神贫困干预——以重庆市F区“等死街”为案例[J]. 社会工作与管理, 2019, 19(5): 83-92.
[11] 栾文敬, 华若昕, 陈静. 社区老年日间照料概念辨析及启示[J]. 社会工作与管理, 2019, 19(2): 29-35.
[12] 吕秋丽, 陈虹霖. 医务社会工作实务中的伦理困境及对策研究——以癌症患者为例[J]. 社会工作与管理, 2018, 18(3): 36-42.
[13] 张晓筱. 居家养老无障碍环境评估与评估工具的研究[J]. 社会工作与管理, 2017, 17(6): 27-34.
[14] 韩央迪, 陈琳, 刘艳霞. 休闲与成功老龄化——基于北京市X社区城市老年人的调查研究[J]. 社会工作与管理, 2017, 17(4): 12-20.
[15] 许新鹏. 代际支持、身心健康与老年人生活满意度[J]. 社会工作与管理, 2017, 17(2): 17-25.
Viewed
Full text


Abstract

Cited

  Shared   
  Discussed   
No Suggested Reading articles found!