Stapley Sally, Pentecost Claire, Quinn Catherine, Victor Christina, Thom Jeanette, Henderson Catherine, Rippon Isla, Sabatini Serena, Clare Linda
REACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical School, Exeter, UK.
Centre for Applied Dementia Studies, University of Bradford, Bradford, UK.
Ageing Soc. 2025 Mar 18:1-31. doi: 10.1017/S0144686X25000030.
Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. Within longitudinal, qualitative interviews on 'living well' with dementia from the IDEAL cohort study, the aim of the analyses was to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. 20 semi-structured, qualitative interviews were conducted with family members of people with dementia, 14 repeated one year later, and analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change, and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterised negotiating the caring role over time: absent/normalising, active role adoption/carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees' accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as 'carers', and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognised, is needed, as well as international initiatives for carer identification.
纵向研究可以深入了解家庭成员如何随着时间的推移来协商护理角色和护理者身份。在理想队列研究中关于痴呆症患者“美好生活”的纵向定性访谈中，分析的目的是识别痴呆症患者家庭成员不断变化且内在的叙述，即他们如何随着时间的推移协商护理角色和护理者身份。对痴呆症患者的家庭成员进行了20次半结构化定性访谈，一年后对其中14人进行了重复访谈，并采用横断面和纵向主题及结构叙事分析方法进行分析。纵向、相互关联的主题，包括痴呆症患者的护理需求和衰退、关系变化以及可变的服务支持，构成了家庭成员的叙事类型。随着时间的推移，有六种不断变化的叙事方式，表现为主导和次要叙事类型，它们刻画了护理角色的协商过程：缺席/正常化、积极承担角色/护理者身份、抗拒、接受与顺从、过度警惕/沉浸与角色束缚，以及预示未来。从受访者的叙述中也可以明显看出护理者身份的有无，尽管即使家庭成员因护理角色负担过重，他们也不一定会表达出护理者身份。重要的不是考虑向护理者身份的转变，而是倾听护理角色中的不同叙事，以了解家庭成员如何体验护理、他们是否将自己视为“护理者”，以及他们何时以及如何需要支持。需要及时且持续的诊断后支持，以识别不同的护理叙事，同时也需要国际社会在护理者识别方面采取举措。
