Exploring the sexual experiences and challenges of individuals with cerebral palsy

Author:

Newell Amber12,Liang Neal34,Moskowitz Jan5,Lee Nancy2,Pan Xiaoyu Norman67,Kim Heakyung26

Affiliation:

1. University of New England College of Osteopathic Medicine, Biddeford, ME, USA

2. Department of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, NY, USA

3. Department of Anesthesiology and Pain Management, University of Texas Southwestern Medical Center, Dallas, TX, USA

4. Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA

5. Weinberg Family Cerebral Palsy Center, Columbia University Irving Medical Center, New York-Presbyterian Hospital, New York, NY, USA

6. Department of Physical Medicine and Rehabilitation, University of Texas Southwestern Medical Center, Dallas, TX, USA

7. Department of Epidemiology and Department of Nutrition, Harvard T.H. Chan School of Public Health, Boston, MA, USA

Abstract

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%).

Publisher

IOS Press

Reference9 articles.

1. A report: the definition and classification of cerebral palsy;Rosenbaum;Dev Med Child Neurol,2007

2. Cerebral palsy: an overview;Krigger;Am Fam Physician,2006

3. Recent trends in cerebral palsy survival;Brooks;Part I: period and cohort effects. Dev Med Child Neurol,2014

4. Sexuality, Disability, and reproductive issues through the lifespan;Cole;Sex Disabil,1993

5. Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates;Wiegierink;J Rehabil Med,2008

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