Sexual Intimacy in Persons with Amyotrophic Lateral Sclerosis and their Partners: A Pilot Study.

Journal of Allied Health Pub Date : 2024-01-01
Victoria Ramirez, Pamela Kittrell, Carlayne Jackson, Autumn Clegg, Ana Allegretti
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引用次数: 0

Abstract

Objective: The objective of this study was to describe concerns experienced among persons with amyotrophic lateral sclerosis (PALS) and their partners regarding sexual intimacy, as well as preferences regarding discussion of the topic with healthcare providers.

Methods: A total of 27 survey responses including 13 PALS and 14 partners were received. Surveys included both quantitative and qualitative data addressing the importance of sexual intimacy to quality of life, assistance required to participate in sexual intimacy, concerns for safety, and preferred timing and method of discussing/receiving information from healthcare professionals.

Results: 100% of respondents stated they had never been asked about sexual intimacy by any healthcare provider. 92% of participants agreed ALS had affected their ability to express sexual intimacy. Participants discussed loss of intimacy as due to muscle weakness, respiratory concerns, and role change among other contributors to the overall experienced change in expression of sexual intimacy. With regards to their preferred method of receiving/discussing information on the effect of ALS on sexual intimacy, 48% of participants preferred use of an online video series, 44% chose a pamphlet, 24% chose a one-on-one discussion with a healthcare provider, and 12% chose a private conversation with their partner and healthcare provider.

Conclusions: The findings greatly illustrate the difficulties and concerns experienced with sexual intimacy among PALS and their partners as well as the preferred methods for receiving information on the topic.

肌萎缩侧索硬化症患者及其伴侣的性亲密关系:一项试点研究。
研究目的本研究旨在描述肌萎缩性脊髓侧索硬化症(PALS)患者及其伴侣对性亲密关系的担忧,以及与医疗服务提供者讨论该话题的偏好:共收到 27 份调查问卷,其中包括 13 名肌萎缩侧索硬化症患者和 14 名伴侣。调查包括定量和定性数据,涉及性亲密行为对生活质量的重要性、参与性亲密行为所需的协助、对安全的担忧以及与医疗保健专业人员讨论/接收信息的首选时间和方法:100%的受访者表示他们从未被任何医疗保健提供者问及过性亲密行为。92% 的参与者认为 ALS 影响了他们表达性亲密关系的能力。受访者认为,肌肉无力、呼吸系统问题和角色转变等因素导致了他们在表达性亲密行为方面的整体变化。关于接受/讨论 ALS 对性亲密关系影响的信息的首选方法,48% 的参与者选择了在线视频系列,44% 的参与者选择了小册子,24% 的参与者选择了与医疗保健提供者进行一对一讨论,12% 的参与者选择了与伴侣和医疗保健提供者进行私下交谈:研究结果极大地说明了 PALS 及其伴侣在性亲密关系方面遇到的困难和担忧,以及他们在获取相关信息方面的首选方法。
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来源期刊
Journal of Allied Health
Journal of Allied Health Medicine-Medicine (all)
CiteScore
1.00
自引率
0.00%
发文量
45
期刊介绍: The Journal of Allied Health is the official publication of the Association of Schools of Allied Health Professions (ASAHP) . The Journal is the only interdisciplinary allied health periodical, publishing scholarly works related to research and development, feature articles, research abstracts and book reviews. Readers of The Journal comprise allied health leaders, educators, faculty and students. Subscribers to The Journal consist of domestic and international college and university libraries, health organizations and hospitals. Almost 20% of subscribers, in the last three years, have been from outside of the United States. Subscribers include the World Health Organization, the American Medical Association and major universities.
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