Department of Health Economics and Health Services Research, 37734University Medical Center Hamburg-Eppendorf, Hamburg Center for Health Economics, Germany.
Dementia (London). 2021 Nov;20(8):2689-2707. doi: 10.1177/14713012211008306. Epub 2021 Apr 13.
Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Narrative interviews with 14 carers (=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method. The result was a relational type formation which comprises different process types: 'Respect your boundaries, stay calm, but plan ahead', 'Acting strategic is making it work', 'Reflect the situation, deal with it, and pull it through' and 'There is no alternative, you have to live with it'. This typology was based on two related dimensions: (prospective, strategic, reflective and limited) and the resulting (accepting, withstanding and enduring). The results yield implications for practice, such as considering individual needs and the care network to provide effective support and promoting the importance of self-care behaviours to achieve a balance between care and personal life.
在照顾痴呆症患者的过程中，个人常常难以在照顾和个人需求之间取得平衡。本研究旨在了解痴呆症患者的主要和次要家庭照顾者如何在整个护理过程中感知非正式护理和个人生活的协调。对来自七个护理网络的 14 名照顾者（=10 名女性，平均年龄：48.79 岁）进行了叙事访谈。使用文献法对访谈进行了分析。结果形成了一种关系类型，包括不同的过程类型：“尊重自己的界限，保持冷静，但提前计划”、“策略性行动是使事情顺利进行”、“反思情况，处理问题，克服困难”和“别无选择，只能接受”。这种分类基于两个相关维度：（前瞻性、策略性、反思性和有限性）和由此产生的（接受、承受和忍受）。研究结果对实践具有启示意义，例如考虑个人需求和护理网络，以提供有效的支持，并促进自我护理行为的重要性，以实现护理和个人生活之间的平衡。
