探索脑瘫患者的性经历和挑战。

IF 0.8 Q4 PEDIATRICS Journal of pediatric rehabilitation medicine Pub Date : 2024-01-01 DOI:10.3233/PRM-240006
Amber Newell, Neal Liang, Jan Moskowitz, Nancy Lee, Xiaoyu Norman Pan, Heakyung Kim
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摘要

目的:脑性瘫痪(CP)是一种影响儿童的常见运动障碍,不断变化的人口统计数据表明,越来越多的儿童在成年后仍能存活。这种变化要求我们从更广阔的视角来看待 CP 护理,尤其是在解决经常被忽视的性问题方面。本研究旨在调查 CP 患者在性生活和亲密关系方面的经历、面临的挑战以及相关因素:这是一项描述性和横断面的单一机构调查,调查对象为 18 至 65 岁、有能力独立完成在线调查的 CP 患者:共有 40 名受访者参与了调查(粗大运动功能分类系统 [GMFCS] I/II 级,32.5%;III 级,35%;IV 级,32.5%)。其中,45%的人有伴侣,60%的人有过性经历,47.5%的人在提交调查问卷时正处于性活跃期,80%的人有手淫经历,45.8%的人认为手淫对其自尊有积极影响。只有 10%的人接受过专为残疾人设计的性教育,而学校(72.5%)和互联网(35%)是最常见的性教育渠道。在所有功能分层中,肌肉痉挛、定位困难和疼痛/不适是亲密活动中最常见的生理挑战。分层分析表明,与功能较高的受访者相比,功能较低的受访者中有伴侣的比例较低(GMFCS IV,23.1%;四肢瘫痪,31.6%),他们过去或现在都有过性经历(GMFCS IV,分别为 44.4%、36.4%;四肢瘫痪,分别为 42.1%、26.3%)。此外,他们的生活质量量表平均得分较低(GMFCS IV,88.4;四肢瘫痪者,88.3),性经历对自尊产生积极影响的比例高于消极影响(GMFCS IV,38.5%;四肢瘫痪者,35%)。
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Exploring the sexual experiences and challenges of individuals with cerebral palsy.

Purpose: Cerebral palsy (CP) is a prevalent motor disorder affecting children, with evolving demographics indicating an increasing survival into adulthood. This shift necessitates a broader perspective on CP care, particularly in addressing the often overlooked aspect of sexuality. The purpose of this study was to investigate experiences of, challenges with, and related factors of sexuality and intimacy that people with CP are facing.

Methods: This was a descriptive and cross-sectional single institution survey among individuals with CP, ages 18 to 65, who had the ability to independently complete an online survey.

Results: A total of 40 respondents participated in the survey (Gross Motor Function Classification System [GMFCS] level I/II, 32.5%; III, 35%; IV, 32.5%). Of those, 45% were partnered, 60% had past sexual experience, 47.5% were currently sexually active at the time of submitting the survey, 80% had masturbation experience, and 45.8% believed it had positive effect on their self-esteem. Only 10% received sex education tailored for people with disability, whereas school (72.5%) and internet (35%) were the most common sources of sex education. Muscle spasms, positioning difficulty, and pain/discomfort were the most common physical challenges experienced during intimate activity amongst all function stratifications. Stratification analysis showed that, compared to higher functioning respondents, a smaller proportion of lower functioning respondents were partnered (GMFCS IV, 23.1%; quadriplegic, 31.6%), had past or current sexual experience (GMFCS IV, 44.4%, 36.4%; quadriplegic, 42.1%, 26.3%, respectively), and had masturbation experience (GMFCS IV, 61.5%); Also, they had worse Quality of Life Scale scores on average (GMFCS IV, 88.4; quadriplegic, 88.3) and a higher rate of reported positive effects of sexual experiences on self-esteem than negative (GMFCS IV, 38.5%; quadriplegic, 35%).

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CiteScore
2.30
自引率
5.30%
发文量
139
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