社会工作与管理 ›› 2022, Vol. 22 ›› Issue (3): 13-22.
韩央迪1, 黄翠萍2, 张雪峰3, 王琛迪1, 李相蒲1
HAN Yangdi1, HUANG Cuiping2, ZHANG Xuefeng3, WANG Chendi1, LI Xiangpu1
摘要: 癌症发病率的持续升高和癌患平均生存期的显著延长,让越来越多的癌患家庭负载着生命难以承受之重。在支持不足的状况下,照顾者的压力负荷和身心疲乏等要素会在照顾者、患者生活质量乃至医患关系上引发负面的连锁效应。综合H 医院肿瘤内科家属照顾者负荷的需求评估和相关干预系统回顾成果,依据希望理念策划癌患家属照顾者生活希望计划互助小组。基于新冠肺炎疫情背景,以癌患家属为中心,进一步搭建集书写、互动、自我疗愈等元素为一体的共享社区。希冀在用户内容生产、自我关怀的过程中实现“希望生产的循环”,帮助癌患照顾者接纳失望和绝望,告别过去,重新开始。这一线上线下模式相结合的生活希望计划,尝试推进医务社会工作服务的整合,打造全人、全程、联动的医务关怀服务链条。
中图分类号:
[1] SUNG H, FERLAY J, SIEGEL R L, et al. Global cancer statistics 2020: globocan estimates of incidence and mortality worldwide for 36 cancers in 185 countries[J]. CA: a cancer journal for clinicians, 2021, 71(3): 209-249 [2] 郑荣寿, 孙可欣, 张思维, 等. 2015年中国恶性肿瘤流行情况分析[J]. 中华肿瘤杂志, 2019(1): 19-28 [3] 中国恶性肿瘤5年生存率已提升至40.5%[J]. 现代医院, 2018(6): 796-796. [4] 耿敬, 席淑新, 周苹. 恶性肿瘤患者家庭照顾者需求的研究进展[J]. 中国实用护理杂志, 2014(22): 74-76 [5] 楼妍, 黄回, 杨明丽. 癌症患者家属身心反应与干预研究现状[J]. 护理与康复, 2007(5): 302-305 [6] 陈昌连, 焦杰, RHA S Y, et al. 癌症患者家庭照顾者照顾负担不容忽视[J]. 护士进修杂志, 2017(14): 1252-1252 [7] BLANCO C, MARKOWITZ J C, HERSHMAN D L, et al. A pilot study of interpersonal psychotherapy for depressed women with breast cancer[J]. American journal of psychotherapy, 2014, 68(4): 489-495 [8] 何雪松. 证据为本的实践兴起及其对中国社会工作发展的启示[J]. 华东理工大学学报(社会科学版), 2004(1): 13-18 [9] 郭伟和, 徐明心, 陈涛. 社会工作实践模式: 从“证据为本”到反思性对话实践——基于“青红社工”案例的行动研究[J]. 思想战线, 2012(3): 34-39 [10] MURDACH A D. What good is soft evidence?[J]. Social work, 2010, 55(4): 309-316 [11] 何国良. 久违的实践研究: 创造社会工作学的路向[J]. 中国社会工作研究, 2017(2): 1-43,228 [12] GRAD J, SAINSBURY P. Problems of caring for the mentally ill at home[J]. Proceedings of the royal society of medicine, 1966, 59(1): 20-23 [13] ZARIT S H, TODD P A, ZARIT J M. Subjective burden of husbands and wives as caregivers: a longitudinal study[J]. Gerontologist, 1986, 26(3): 260-266 [14] CHOU K R. Caregiver burden: a concept analysis[J]. Journal of pediatric nursing, 2000, 15(6): 398-407 [15] RYMER S, SALLOWAY S, Norton L, et al. Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer disease[J]. Alzheimer disease & associate disorders, 2002, 16(4): 248-253 [16] 夏凤. 老年癌症晚期患者家庭照顾者负担的现状及影响因素分析[J]. 当代护士(上旬刊), 2016(8): 21-22 [17] 高洋洋, 姜喆. 癌症患者照顾者照顾负荷影响因素及干预措施的研究进展[J]. 护理学杂志, 2014(9): 95-97 [18] 刘爱琴, 陈小红, 吴美华. 住院化疗的癌症患者主要照顾者心理状况分析[J]. 中华护理杂志, 2006(3): 224-226 [19] 戈晓华, 夏海鸥, 尹涛, 等. 胃癌术后患者家庭照顾者负担及其影响因素分析[J]. 护理管理杂志, 2009(11): 1-2 [20] 王彩英, 刘化侠. 癌症患者家庭照顾者负担及护理干预的研究进展[J]. 当代护士(下旬刊), 2017(9): 25-28 [21] 赵瑞, 刘琼玲, 陈香芝. 慢性病照顾者的照顾负荷研究进展[J]. 广东医学院学报, 2014(2): 239-241 [22] 王建华, 姜亚芳. 消化系统癌症晚期患者主要照顾者压力性负担调查分析[J]. 护理学报, 2011(17): 35-37 [23] 张莉莉, 余利君, 于丽, 等. 原发性肝癌晚期病人主要照顾者压力负荷调查分析[J]. 护理研究, 2009(6): 1519-1521 [24] HSIAO C Y. Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.[J]. Journal of clinical nursing, 2010, 19(23–24): 3494-3503 [25] SHIEH S, TUNG H, LIANG S. Social support as influencing primary family caregiver burden in Taiwanese patients with colorectal cancer[J]. Journal of nursing scholarship, 2012, 44(3): 223-231 [26] GUNES Z, CALISIR H. Burdens perceived by the family caregivers of cancer patients receiving outpatient chemo-therapy and family functions: a cross-sectional study[J]. Health MED, 2012, 6(3): 856-863 [27] VAN D, WITTE L, SCHURE L M, et al. Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention[J]. Clinical rehabilitation, 2001, 15(6): 669-677 [28] YEH S H, JOHNSON M A, WANG S T. The changes in caregiver burden following nursing home placement[J]. International journal of nursing studies, 2002, 39(6): 591-600 [29] YUSUF A J, ADAMU A, NUHU F T. Caregiver burden among poor caregivers of patients with cancer in an urban African setting[J]. Psycho-oncology, 2011, 20(8): 902-905 [30] SHERWOOD P R, GIVEN B A, GIVEN C W, et al. Predictors of distress in caregivers of persons with a primary malignant brain tumor[J]. Research in nursing & health, 2006, 29(2): 105-120 [31] 蔡长月, 陈秋莲, 柳静. 直肠癌患者家庭主要照顾者负荷度与社会支持度的相关性研究[J]. 预防医学情报杂志, 2012(10): 779-782 [32] 唐旭, 李黎, 谢杰荣. 参加社保与未参加社保癌症患者及其直系亲属的心理状况调查分析[J]. 广东医学院学报, 2006(5): 546-548 [33] SHIN D W, PARK J H, SHIM E J, et al. The development of a comprehensive needs assessment tool for cancer-caregivers in patient–caregiver dyads[J]. Psycho-oncology, 2011, 20(12): 1342-1352 [34] 赵新爽, 张银萍. 癌症患者照顾者综合需求量表的本土化研究[J]. 中华护理杂志, 2014(8): 1005-1010 [35] 操帅, 杨志敏, 谢莉玲, 等. 妇科癌症患者主要照顾者综合需求现状及其相关因素[J]. 现代临床护理, 2019(2): 18-25 [36] 邢双双, 顾则娟, 蒋秀美, 等. 恶性血液病成人住院患者照顾者综合需求现状及影响因素分析[J]. 护理学报, 2018(5): 52-57 [37] 梁俊瑜. 肺癌手术患者女性照顾者综合需求的相关因素分析[D]. 济南: 山东大学, 2018: 16-35. [38] 石春凤, 刘梅, 刘伟红. 原发性肝癌手术患者主要照顾者综合需求的调查[J]. 天津护理, 2017(5): 384-386 [39] 周瑛. 住院癌症患者照顾者综合需求与社会支持的调查分析[D]. 广州: 南方医科大学, 2016: 13-27. [40] YI M, KIM H. Unmet needs and quality of life of family caregivers of cancer patients in South Korea[J]. Asia-Pacific journal of oncology nursing, 2015, 2(3): 152-159 [41] CLARKE M, CHALMERS I. Discussion sections in reports of controlled trials published in general medical journals[J]. Jama, 1998, 280(3): 280-282 [42] MCMILLAN, SUSAN C. Interventions to facilitate family caregiving at the end of life[J]. Journal of palliative medicine, 2005, 8 (supplement 1): 132-139. [43] FANG F, ZHAO H, TONG F, et al. A systematic review of psychosocial interventions to cancer caregivers[J]. Frontiers in psychology, 2017, 834(8): 1-12 [44] LEE J Z J, CHEN H C, LEE J X, et al. Effects of psychosocial interventions on psychological outcomes among caregivers of advanced cancer patients: a systematic review and meta-analysis[J]. Supportive care in cancer, 2021, 29(12): 7237-7248 [45] NORTHOUSE L L, KATAPODI M C, SONG L, et al. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials[J]. CA:a cancer journal for clinicians, 2010, 60(5): 317-339 [46] 周勤学, 黄丽华. 癌症患者家庭照顾者心理干预的研究进展[J]. 护理与康复, 2019(12): 32-36 [47] APPLEBAUM A J, BREITBART W. Care for the cancer caregiver: a systematic review[J]. Palliative & supportive care, 2013, 11(3): 231-252 [48] BADGER T, SEGRIN C, DORROS S M, et al. Depression and anxiety in women with breast cancer and their partners[J]. Nursing research, 2007, 56(1): 44-53 [49] 陈丽, 任小红, 黄伶智, 等. 认知行为干预对肺癌化疗患者主要照顾者照顾负担的影响[J]. 齐鲁护理杂志, 2014(2): 14-16 [50] KAY O, LIZIANA O, CHIEDU E, et al. Effects of rational-emotive hospice care therapy on problematic assumptions, death anxiety, and psychological distress in a sample of cancer patients and their family caregivers in nigeria[J]. International journal of environmental research and public health, 2016, 13(9): 929-929 [51] RATHI, MAHENDRAN, HAIKEL, et al. Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: a quasi-experimental mixed-methods study[J]. Health and quality of life outcomes, 2017, 15(1): 1-8 [52] AMOYAL N, NISOTEL L, PEREZ G K, et al. Mobile application of cognitive behavioral therapy for anxiety and advanced cancer[J]. Journal of clinical oncology, 2015, 33(supplement 29): 220-220 [53] MOSHER C E, SECINTI E, KROENKE K, et al. Acceptance and commitment therapy for fatigue interference in advanced gastrointestinal cancer and caregiver burden: protocol of a pilot randomized controlled trial[J]. Pilot and feasibility studies, 2021, 7(1): 1-12 [54] UTNE I, MIASKOWSKI C, PAUL S M, et al. Association between hope and burden reported by family caregivers of patients with advanced cancer[J]. Supportive care in cancer, 2013, 21(9): 2527-2535 [55] DUGGLEBY W D, WILLIAMS A, HOLSTLANDER L, et al. Hope of rural women caregivers of persons with advanced cancer: guilt, self-efficacy and mental health[J]. Rural and remote health, 2014, 14(1): 126-138 [56] 边静, 张兰凤, 刘谆谆, 等. 癌症患者家庭照顾者疾病获益感研究现状及启示[J]. 中华现代护理杂志, 2018(7): 860-864 [57] 邓本敏, 饶洪英, 兰花, 等. 癌症患者家庭照顾者压力负荷现状与干预研究进展[J]. 中国护理管理, 2019(9): 1376-1380 [58] APPLEBAUM A J, BUDA K L, SCHOFIELD E, et al. Exploring the cancer caregiver’s journey through web-based meaning-centered psychotherapy[J]. Psycho-oncology, 2018, 27(3): 847-856 [59] KÄLLANDER K, TIBENDERANA J K, AKPOGHENETA O J, et al. Mobile health (mhealth) approaches and lessons for increased performance and retention of community health workers in low-and middle-income countries: a review[J]. Journal of medical internet research, 2013, 15(1): 17 [60] DUGGLEBY W D, WILLIAMS A M. Living with hope: developing a psychosocial supportive program for rural women caregivers of persons with advanced cancer[J]. BMC palliative care, 2010, 9(1): 1-8 [61] DUGGLEBY W, WILLIAMS A, HOLSTLANDER L, et al. Evaluation of the living with hope program for rural women caregivers of persons with advanced cancer[J]. BMC palliative care, 2013, 12(1): 1-11 [62] 杨志芳. 住院晚期癌症患者家庭照顾者希望水平及生活质量研究[D]. 西安: 第四军医大学, 2015: 93. [63] DUGGLEBY W, DEGNER L, WILLIAMS A, et al. Mixed method evaluation of a Living with Hope Program for older terminally ill cancer patients[J]. Oncology nursing forum, 2006, 33(2): 409-409 [64] DUGGLEBY W, COOPER D, NEKOLAICHUK C, et al. The psychosocial experiences of older palliative patients while participating in a Living with Hope Program[J]. Palliative & supportive care, 2016, 14(6): 672-679 [65] 杨志芳, 付菊芳, 左秀萍, 等. 生活希望计划干预对肺癌患者家庭照顾者的影响[J]. 中华护理杂志, 2017(8): 920-925 [66] 李如贵. 家庭访视联合生活希望计划对食管癌患者照顾者的 影响研究[J]. 中外医学研究, 2018(31): 176-178 [67] 李媛, 雷云香. 生活希望计划干预对肝癌患者家庭照顾者心理负担、希望水平及生活质量的影响[J]. 中国健康心理学杂志, 2019(9): 1382-1386 [68] 费宝乐. 探讨生活希望计划干预对肝癌患者家庭照顾者的影响[J]. 按摩与康复医学, 2019(19): 96-97 [69] 尹伟琴, 范晓东. 生活希望计划护理干预对晚期肺癌病人家庭照顾者希望水平、负性情绪的影响[J]. 护理研究, 2019(17): 3042-3045 [70] MCLAUGHLIN J A, JORDAN G B, MORELL J A. Logic models: a tool for telling your programs performance story[J]. Evaluation and program planning, 1999, 22(1): 65-72 [71] TAYLOR-POWELL E, HENERT E. Developing a logic model: Teaching and training guide[J]. Benefits, 2008, 3(22): 1-118 [72] HOLTSLANDER L F, DUGGLEBY W, WILLIAMS A M, et al. The experience of hope for informal caregivers of palliative patients[J]. Journal of palliative care, 2005, 21(4): 285-291 [73] 王海洋, 王芳萍, 夏林清. 社会工作实践知识的意涵与发展路径——兼论反映实践取向行动研究路数[J]. 华东理工大学学报(社会科学版), 2019(3): 1-12 |
[1] | 刘杰, 谢桂梅, 邹英. 医务社会工作部何以“异化”——基于F省H医院的案例分析[J]. 社会工作与管理, 2020, 20(5): 30-41. |
[2] | 张培源. 社会支持视角下渐冻症患者的需求研究[J]. 社会工作与管理, 2019, 19(2): 49-56. |
[3] | 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. |
[4] | 苏海1, 史娜娜2. “一般系统论”视域下本土医务社会工作实践的路径创新 —— 基于N区“医路同行”项目的个案研究[J]. 社会工作与管理, 2015, 15(5): 27-32. |
|