行动中的赋权：血友病患者及其家庭社会工作服务实践研究

社会工作与管理 ›› 2021, Vol. 21 ›› Issue (1): 43-53.

行动中的赋权：血友病患者及其家庭社会工作服务实践研究

杨晶

贵州大学公共管理学院，贵州贵阳，550025

收稿日期:2020-09-25 出版日期:2021-01-15 发布日期:2021-01-12
作者简介:杨晶(1979-),女,土家族,副教授,博士;主要研究方向:儿童社会工作,残疾人社会工作及社会工作实践研究。
基金资助:
贵州省研究生教育教学改革重点课题“行动中的教育——社会工作专业硕士教育服务学习的行动研究”(黔教合YJSCXJH〔2020〕020)。

Practice Research on Social Work Service for Haemophiliacs and Their Families from the Empowerment Perspective

YANG Jing

Sociology Department, Guizhou University , Guiyang, Guizhou, 550025, China

Received:2020-09-25 Online:2021-01-15 Published:2021-01-12

摘要/Abstract

摘要： 基于历时四年的血友病患者及其家庭的社会工作服务行动研究项目，采用赋权视野下的行动研究框架探讨社会工作在血友病患者及其家庭专业服务中的行动路径。通过分析集体悲情故事的幻灭、服务对象主体性转变和罕见病患儿家庭自助组织成立三个阶段的社会工作服务，发现伴随服务对象参与程度的深入和不同主体之间的对话，可实现自我层面、个体层面、团体/组织层面的赋权。同时发现，赋权视角能协助血友病患者及其家庭这一类“弱势中的弱势”群体主体性发生质的转变；在经验匮乏的社会工作领域，实践研究可助力在具体的实务情境中积累经验，并贡献于社会工作的知识建构。

关键词: 血友病患者, 家庭社会工作, 实践研究

Abstract: Based on the four-year action research project of social service for haemophiliacs and their families, this study explores social work service path for the patients with haemophilia and their families from the perspective of empowering practice research. In the three stages of social work services, including the disillusionment of collective tragedies, the transformation with the subjectivity of service objects and the establishment of family self-help organizations for children with rare diseases, it is found that the empowerment at the personal level, individual level and group/organization level can be realized with the deepening participation of service objects and communications between different subjects. It is found that empowerment perspective can contribute to improving the subjectivity of haemophiliacs and their families, the vulnerable of the vulnerable group. In addition, practice research is a suitable method for social work in an inexperienced field to develop experience and also help with the professional knowledge building.

Key words: haemophiliac, family social work, practice research

中图分类号:

C916

杨晶. 行动中的赋权：血友病患者及其家庭社会工作服务实践研究[J]. 社会工作与管理, 2021, 21(1): 43-53.

YANG Jing. Practice Research on Social Work Service for Haemophiliacs and Their Families from the Empowerment Perspective[J]. SOCIAL WORK AND MANAGEMENT, 2021, 21(1): 43-53.

参考文献

[1] FINDLEY P. A social work practice in the chronic care model: Chronic illness and disability care[J]. Journal of social work, 2014, 14(1): 83-95
[2] ALLEN K N, KACHALSKY E. Aging with hemophilia: Implications for social work practice[J]. Social work in health care, 2010, 49(4): 327-344
[3] WAGNER E H. The role of patient care teams in chronic disease management[J]. BMJ: British medical journal, 2000, 320(7234): 569-572
[4] 陶蕃瀛. 行动研究: 一种增强权能的助人工作方法[J]. 应用心理研究, 2004(23): 33-48
[5] KATZ A H. Some psychosocial problems in hemophilia[M]//TURNER F J. Differential diagnosis and treatment in social work. Simon and Schuster, 1983: 442-449.
[6] SALK LHILGARTNER M, GRANICH B. The psycho-social impact of hemophilia on the patient and his family[J]. Social science & medicine (1967), 1972, 6(4): 491-505
[7] 李慧贞,等. 血友病病童母亲的压力源及其相关因素之探讨[J]. 慈济医学, 2003(1): 45-52
[8] KHAIR K, CHAPLIN S. The impact on parents of having a child with haemophilia[J]. The Journal of haemophilia practice, 2016, 3(2): 4-14
[9] 毛新春, 叶丽娟, 卓妙如. 成年血友病患者对疾病、身体心像改变之困扰及因应行为[J]. 身心障碍研究, 2005(4): 229-245
[10] 周富美. 台湾地区血友病患与血友艾滋病之生病经验[D]. 台北: 台北医学大学医学科学研究所, 2005: 1.
[11] TRZEPACZDA M, VANNATTA K, DAVIES WH, STEHBENS J A, NOLL R B. Social, emotional, and behavioral functioning of children with haemophilia[J]. Journal of developmental &behavioral pediatrics, 2013, 24(4): 225-232
[12] 陈永法, 伍琳. 我国罕见病界定标准初探[J]. 中国卫生政策研究, 2014(10): 16-20
[13] 李莹. 关于我国罕见病相关政策制定的探讨—基于罕见病群体生活状况调研的分析[J]. 科技与社会, 2014(2): 77-89
[14] 龚时薇, 张亮, 金剑. 市场经济条件下罕见病医药卫生政策的伦理选择[J]. 医学与社会, 2009(10): 12-13
[15] SOLOMON, B.B. Black empowerment: Social work in oppressed communities[M]. NewYork: Colunmbia University Press, 1976: 26-27.
[16] CASSIS F Y, QUEROL F, FORSYTH A, et al. International advisory board. Psychosocial aspects of haemophilia: A systematic review of methodologies and findings[J]. Haemophilia, 2012, 18(3): 101-114
[17] 古学斌. 道德的重量: 论行动研究与社会工作实践[J]. 中国农业大学学报(社会科学版), 2017(3): 67-78
[18] MYRIN-WESTESSON L, BAGHAEI F, FRIBERG F. The experience of being a female carrier of haemophilia and the mother of a haemophilic child[J]. Haemophilia, 2013, 19(2): 219-224
[19] KANG H S, KIM W O, JEONG Y, et al. Effect of a self-help program for mothers of hemophilic children in Korea[J]. Haemophilia, 2012, 18(6): 892-897
[20] ADAMS R. 赋权、参与和社会工作[M]. 汪冬冬, 译. 上海: 华东理工大学出版社, 2013: 5.
[21] REASON P, BRADBURY H. The SAGE handbook of action research: Participative inquiry and practice[M]. (2nd ed.). London, UK: Sage Publications Ltd., 2008: 4.
[22] 王思斌. 我国社会工作研究评述[M]//王思斌. 社会工作本土化之路. 北京: 北京大学出版社, 2010: 386-402.
[23] BRADBURY H, REASON P. Action research: An opportunity for revitalizing research purpose and practices[J]. Qualitative social work, 2003, 2(2): 155-175
[24] SOMEKH B, LEWIN C. Research methods in the social sciences[M]. London: Sage, 2005: 90.
[25] LATHER P. Research as praxis[J]. Harvard education review, 1986, 56(3): 257-277
[26] KEMMIS S, MCTAGGART R. The action research planner. Geelong[M]. Victoria: Deakin University Press. 1988: 19.
[27] 唐纳德·A·舍恩.反映的实践者: 专业工作者如何在行动中思考[M].夏林清, 译. 北京: 教育科学出版社, 2012: 61.
[28] REE S. Achieving power: practice and policy in social welfare[M]. London: Aleen&Unwin, 1991: 10.
[29] 张和清. 社会工作: 通向能力建设的助人自助——以广州社工参与灾后恢复重建的行动为例[J]. 中山大学学报(社会科学版), 2010(3): 141-148
[30] 朱志强, 徐明心, 殷妙仲. 作为道德和政治实践的社会工作[M]//林昭寰, 朱志强. 社工何价——专业沉思. 中国香港: 花千树出版有限公司, 2014: 296-310.
[31] OLIVEIRA P, ZEJNILOVIC L, CANH~AO H, et al. Innovation by patients with rare diseases and chronic needs[EB/OL]. [2015-10-02]. http://doi.org/10.11861s13023-015-0257-2.
[32] HERRICKEK, NUSSBAUM R, HOLTZMAN NA, WISSOW L. Asking fathers: A study of psychosocial adaptation[J]. Haemophilia, 2004, 10(5): 582-589
[33] DOMINELLI L.女性主义社会工作: 理论与实务 [M]. 王瑞洪, 张宇莲, 李太斌, 译. 上海: 华东理工大学出版社, 2014: 107-108.
[34] WHITE M, DAVID EPSTON D. 故事、知识、权力: 叙事治疗的力量[M]. 廖世德, 译. 上海: 华东理工大学出版社, 2013: 13.
[35] 克里斯·阿吉里斯, 罗伯特·帕特南, 戴安娜·麦克莱恩·史密斯.行动科学: 探究与介入的概念、方法与技能[M]. 夏林清, 译. 北京: 教育科学出版社, 2012: 4.
[36] TAYLOR G. Challenges for social work in hemophilia care[J]. Health & social work, 2004, 29(2): 149

Metrics

Viewed

Full text

Abstract

Cited

Shared

Discussed