Department of Global Health & Social Medicine, King's College London, London, UK.
Sociol Health Illn. 2021 Jan;43(1):65-81. doi: 10.1111/1467-9566.13194. Epub 2020 Sep 30.
Transitions into informal care roles are associated with various characteristics, for example gender and geographic proximity, but such associations are insufficient to explain role delegation, overlooking the interpersonal structure-agency nexuses that constitute role trajectories. This paper explores unequal role delegation within 7 families affected by dementia, presenting data from interviews with 7 people with dementia and 26 carers living in the community in the United Kingdom. Two key care roles are identified: the relatively un-involved role of peripheral actors and the lynchpin role of main carers who take on most of the care tasks. These roles emerge from negotiations around a range of extraneous factors that collectively comprise cumulative baggage, including historic conflicts and childcare commitments. The unequal distribution of care reflects widely noted demographic associations with role delegation, but is enacted and justified through the interpersonal negotiation of personalised meanings regarding individual circumstances and suitability. Though deeply personal when taken at face value, these meanings imbibe sociocultural norms and political economies of care to structurally position family members in relation to each other and signpost appropriate candidates for caring roles, even before such care is required.
角色转变与各种特征相关,例如性别和地理上的接近程度,但这些关联不足以解释角色的委托,忽视了构成角色轨迹的人际结构-机构关系。本文探讨了受痴呆症影响的 7 个家庭中不平等的角色委托,展示了来自英国社区内 7 名痴呆症患者和 26 名照顾者的访谈数据。确定了两个关键的照顾角色:外围角色的相对不参与和主要照顾者的关键角色,他们承担了大部分的照顾任务。这些角色源自围绕一系列额外因素的谈判,这些因素共同构成了累积的负担,包括历史冲突和育儿承诺。照顾的不平等分配反映了与角色委托广泛相关的人口统计学关联,但通过对个人情况和适合性的个性化意义进行人际谈判来实施和证明。虽然从表面上看这些意义是非常个人化的,但它们吸收了社会文化规范和照顾的政治经济学,将家庭成员在彼此之间的关系中进行结构性定位,并为照顾角色指明合适的候选人,甚至在需要照顾之前。