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无论疾病还是健康:照顾慢性病配偶或残疾配偶的压力与收获。

In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse.

作者信息

Solomi Victoria L, Casiday Rachel E

机构信息

1 University of Wales Trinity Saint David, Lampeter, UK.

2 Department of Public Health, Samford University, Birmingham, AL, USA.

出版信息

Chronic Illn. 2017 Jun;13(2):75-87. doi: 10.1177/1742395316664960. Epub 2016 Aug 17.

Abstract

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires ( N = 40) and in-depth interviews ( N = 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer ( p = 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial.

摘要

目的 研究配偶照顾者的主观体验,重点关注这一角色的积极、消极和关系方面。方法 采用混合方法进行探索性研究,对英格兰西南部的配偶照顾者进行问卷调查(N = 40)和深入访谈(N = 8)。结果 参与者使用消极和积极的词汇相结合来描述他们的经历,被照顾配偶的智力敏锐度、对照顾者的行为以及所需的照顾量,都会影响照顾者的主观体验。女性因身为照顾者而更有可能报告忽视自己的健康(p = 0.02)。婚姻关系本身非常重要,许多照顾者采取特殊措施来维持和发展他们的婚姻关系。照顾者以各种方式适应他们的角色,那些接受自己的处境并获得支持的人似乎最能应对该角色的要求。讨论 本研究虽然基于一个规模较小且地域受限的样本,但深入了解了配偶照顾者的积极、消极和关系体验。鼓励照顾者参与促进健康活动的支持,理想情况下为双方提供共同参与此类活动的机会,可能会特别有益。

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