痴呆症父母的女儿照顾者经历的核心关系:解释性现象学分析

Dementia (London, England) Pub Date : 2024-02-01 Epub Date: 2023-12-11 DOI:10.1177/14713012231220223
Elena Ruyant Belabbas, Charlotte Manceau, Emilie Wawrziczny
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摘要

背景:患有痴呆症的父母需要子女照顾者在情感、身体、心理和经济上给予支持,才能继续在家生活。事实表明,与儿子照顾者相比,女儿照顾者更多地参与自我照顾和家务劳动,并经历更多的痛苦:本研究旨在调查为居住在自己家中的痴呆症父母提供非正式护理的女儿照顾者的经历:对 11 名阿尔茨海默病父母的女儿照顾者进行了半结构式访谈。采用解释性现象分析法对访谈进行分析:分析得出了三个轴心:[1] 之前的条件和之后的条件:与患有阿尔茨海默氏症的父母之前关系的质量是一个决定性因素,可以确定女儿照顾者的三种特征:"感激者"、"怨恨者 "和 "矛盾者":与患有阿尔茨海默氏症的父母关系的好坏会影响到被照顾的感觉;[3] 孤独或几乎孤独:当支持网络不存在时,会渴望得到它,但当它存在时,则会保持距离。讨论:研究结果强调了评估依恋质量和支持与父母关系的重要性(尤其是在患病前关系不融洽的情况下)。此外,还应鼓励女儿的照顾者委派任务,并重新关注与其价值观相关的行动。可计划召开家庭调解会议,以改善护理组织工作并建立有效的合作关系。
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The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis.

Background: Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers.

Objective: The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home.

Method: Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer's disease. Interviews were analysed using Interpretative Phenomenological Analysis.

Results: Three axes emerged from the analyses: [1] the before conditions the after: the quality of the previous relationship with the parent with Alzheimer's disease is a determining factor and allows the identification of three profiles of daughter caregivers: 'the grateful', 'the resentful' and 'the ambivalent', [2] when the relationship protects against the sense of burden: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer's disease, and [3] alone or almost: the support network is desired when it is absent but kept at arm's length when it is present.

Discussion: The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.

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