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带着诊断去约会:多发性硬化症患者的生活经历

Dating with a Diagnosis: The Lived Experience of People with Multiple Sclerosis.

作者信息

Tabassum Kinza, Fox Jackie, Fuller Sara, Hynes Sinéad M

机构信息

Discipline of Occupational Therapy, School of Health Sciences, Áras Moyola, National University of Ireland Galway, Galway, Ireland.

出版信息

Sex Disabil. 2022;40(1):3-20. doi: 10.1007/s11195-021-09698-9. Epub 2021 May 26.

Abstract

Multiple Sclerosis (MS) is a neurological condition which usually manifests between the ages of 20-40 years. This is a critical period for developing relationships, particularly romantic relationships. People with MS can experience sexual dysfunction, limb weakness, fatigue, pain, reduced mood and bladder/bowel dysfunction; potentially affecting their ability to participate in many meaningful activities, including those associated with romantic relationships, dating or engaging in sexual intercourse. Dating or starting romantic relationships can be difficult for people with physical disabilities as they can experience stigma, negative societal attitudes and the fear of requiring care from potential partners. Dating experiences of people with progressive conditions like MS have not been explored in detail. The aim of this study was to develop a rich understanding of how living with MS interacts with/influences dating and developing romantic relationships. The study used a descriptive phenomenological design and a purposive sampling strategy. Colaizzi's descriptive phenomenological method was used to analyze the data (Colaizzi, 1978). Five females and two males, aged 23-51, participated in two online focus groups. Dating with a diagnosis of MS is a highly personal phenomenon, characterized by individual differences in values and experiences. Core to the phenomenon was personal decision-making about disclosure of the diagnosis and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. The findings will help health professionals working with adults with MS understand this important aspect of their lives.

摘要

多发性硬化症(MS)是一种神经系统疾病,通常在20至40岁之间出现症状。这是建立人际关系,尤其是恋爱关系的关键时期。患有MS的人可能会出现性功能障碍、肢体无力、疲劳、疼痛、情绪低落以及膀胱/肠道功能障碍;这可能会影响他们参与许多有意义活动的能力,包括与恋爱关系、约会或性行为相关的活动。对于身体残疾的人来说,约会或开始恋爱关系可能会很困难,因为他们可能会遭受耻辱、负面的社会态度以及担心需要潜在伴侣的照顾。像MS这种渐进性疾病患者的约会经历尚未得到详细探讨。本研究的目的是深入了解患有MS如何与约会及发展恋爱关系相互作用/产生影响。该研究采用了描述性现象学设计和目的抽样策略。使用科莱齐的描述性现象学方法对数据进行分析(科莱齐,1978年)。五名女性和两名男性,年龄在23至51岁之间,参加了两个在线焦点小组。带着MS诊断去约会是一种高度个性化的现象,其特点是价值观和经历存在个体差异。该现象的核心是关于披露诊断的个人决策,以及在新的/发展中的恋爱关系中与伴侣持续适应病情的波动性质。这些研究结果将有助于为患有MS的成年人提供服务的健康专业人员了解他们生活中的这一重要方面。

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