共病共生与同舟共济:以炎症性肠病为例分析女性长期非正式照顾者的个体与社群获益感  

"We are on the Same Boat":Personal and Community Level Benefits of Female Long-term Family Carers with Examples of Inflammatory Bowel Disease

作　　者：丁瑜[1] 韩孟元 陈宝敏 DING Yu;HAN Meng-yuan;CHEN Bao-min(Department of Sociology and Social Work,Sun Yat-sen University,Guangzhou 510275,Guangdong Province,China)

机构地区：[1]中山大学社会学与社会工作系,广东广州510275

出　　处：《妇女研究论丛》2024年第6期64-80,共17页Journal of Chinese Women＇s Studies

摘　　要：炎症性肠病是无法根治、需终身用药治疗、高发于青少年的少见慢性病,患者身心生活需要悉心照顾。本文从研究和日常服务中发现,大部分照顾者为女性,她们在长期照顾的沉重负担下部分女性照顾者依然显现了较高的照顾动力。通过与24名照顾者和7名患者的深入接触和访谈,本文详细描绘了女性照顾者在饮食营养、病情监控和身心情绪照顾等方面多重衍生和延伸的照顾责任,她们与患者身心精神紧密联结,形成了“共病”关系,并努力建立家庭共同面对疾病的“共生”关系,实现了自我认知和角色适应、学习成长与身心调整、弹性自我边界等个体层面的获益感,为长期照顾提供了部分动力。在社会工作的介入与激发下,“共生”关系拓展到家庭以外,她们通过志愿活动广泛参与、由己及人,获得了同舟共济式的社群获益感,有效弥补了个体获益感的零散和不稳定,为社会工作介入慢性病的长期照顾提供了现实参照。Inflammatory Bowel Disease is an incurable chronic disease common for ages 15-34,posing not only physical,psychological challenges to patients in many aspects of life and work but also heavy burdens to family caregivers,who are mainly women in the family.Often without care services,we found that some female caregivers have strong motivation in the tedious care process.In-depth interviews with 24 caregivers and 7 patients have taught us that caregivers take up multiple tasks from ensuring food and nutrition,overall monito-ring of physical conditions,to attending to emotion and mental conditions of the patients.Their all-inclusive concerns with the wellbeing of the patients can be highly time and energy consuming.They were deeply connected with the patients,at the level of sharing the physi-cal and emotional conditions and redirecting their families to face the disease together.Women caregivers gained personal benefits through changing understanding of the self and relationship with their families,which provides partial motivation of their long-term care.

关 键 词：女性照顾者 长期非正式照顾 获益感 社会工作 炎症性肠病 慢性病 

分 类 号：C913.68[经济管理]