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. 2024;17(1):35-45.
doi: 10.3233/PRM-240006.

Exploring the sexual experiences and challenges of individuals with cerebral palsy

Amber Newell  1   2 , Neal Liang  3   4 , Jan Moskowitz  5 , Nancy Lee  2 , Xiaoyu Norman Pan  6   7 , Heakyung Kim  2   6
Affiliations

Exploring the sexual experiences and challenges of individuals with cerebral palsy

Amber Newell et al. J Pediatr Rehabil Med. 2024.

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%).

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Conflict of interest statement

Heakyung Kim declares the following potential conflicts of interest related to this work: consultancy and advisory board member of Ipsen Pharmaceuticals; consultant for Allergan and Merz; advisory member for pediatric spasticity for Allergan; advisory board member for Pacira Biosciences.

Figures

Fig. 1
Fig. 1
Current relationship status by (a) education level, (b) Gross Motor Function Classification System (GMFCS) level, and (c) topographical distribution.
Fig. 2
Fig. 2
Active dating status by Gross Motor Function Classification System (GMFCS) level and topographical distribution.
Fig. 3
Fig. 3
Past sexual experience by (a) education level, (b) Gross Motor Function Classification System (GMFCS) level, and (c) topographical distribution.
Fig. 4
Fig. 4
Current sexual status by (a) Gross Motor Function Classification System (GMFCS) level, (b) topographical distribution, and (c) age.
Fig. 5
Fig. 5
Masturbation behavior (a) overall, (b) by Gross Motor Function Classification System (GMFCS) level, and (c) by topographical distribution.
Fig. 6
Fig. 6
Physical challenges experienced during intimate activity by (a) Gross Motor Function Classification System (GMFCS) level and (b) topographical distribution.
Fig. 7
Fig. 7
Impact of sexual experiences on self-esteem by (a) history of past sexual experience, (b) Gross Motor Function Classification System (GMFCS) level, and (c) topographical distribution.
Fig. 8
Fig. 8
Sex education and communication by (a) people that the patients have been able to talk to about sex and sexuality and (b) resource of sex education they have received.
See this image and copyright information in PMC

References

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