Abstract
The recognition that people living with impairments are sexual beings is a relatively new one. Historically, people living
with a physical impairment including neuromuscular disorders (NMDs) have been perceived as asexual or potentially deviant.
They can experience a lack of information as well as distress and anguish around their sexual and personal relationships.
They often face obstacles to maximizing their sexual potential and may internalize negative societal assumptions and attitudes
about their sexuality. The extent to which both sexual expression and interactions with healthcare providers influence the
impact of physical impairment on the quality of life (QoL) of NMD patients has not previously been determined, providing the
rationale for this study. The purpose of this study was (a) to determine if the levels of sexual expression and interactions
with healthcare providers varied significantly between people with and without a NMD, and (b) to explore the extent to which
sexual expression and interactions with healthcare providers significantly influenced the impact of NMDs on QoL. Responses
were collected via an online survey using seven instruments: a demographic questionnaire; the Individualised Neuromuscular
Quality of Life (INQoL); the Watts Sexual Function Questionnaire (WSFQ Male and Female); the Client Satisfaction Questionnaire
(CSQ-8); WHO (five) Wellbeing Index; the Brief Burns Depression Checklist (BDC); and the Neuromuscular Patients and HCPS Sexuality
Questionnaire. The participants included 144 people living with a NMD (termed the NMD group) and 134 people without a NMD
(termed the control group). The scores for sexual expression were significantly lower in the NMD group. The impact on QoL
was significantly higher in the NMD group. The frequency of sexual intercourse, the consistency of engagement in fulfilling
sexual activity, and to a lesser extent, the facilitation of sexual expression by healthcare providers, was found to significantly
reduce the deleterious impact of NMDs on QoL of the NMD group. The inhibition of sexual expression associated with the negative
attitudes of healthcare providers was predicted to significantly increase the deleterious impact of physical impairment on
the QoL of the NMD group. Sexual expression may help to diminish the deleterious impact of physical impairment on the QoL
of people living with a NMD, and interactions with healthcare providers may moderate the strength of this impact. The clinical
implications include healthcare providers being encouraged to facilitate sexual expression in all patients, irrespective of
their level of physical impairment. Patients with a NMD are encouraged to understand their psychosexual health rights and
to assert those rights when consulting with healthcare providers.
with a physical impairment including neuromuscular disorders (NMDs) have been perceived as asexual or potentially deviant.
They can experience a lack of information as well as distress and anguish around their sexual and personal relationships.
They often face obstacles to maximizing their sexual potential and may internalize negative societal assumptions and attitudes
about their sexuality. The extent to which both sexual expression and interactions with healthcare providers influence the
impact of physical impairment on the quality of life (QoL) of NMD patients has not previously been determined, providing the
rationale for this study. The purpose of this study was (a) to determine if the levels of sexual expression and interactions
with healthcare providers varied significantly between people with and without a NMD, and (b) to explore the extent to which
sexual expression and interactions with healthcare providers significantly influenced the impact of NMDs on QoL. Responses
were collected via an online survey using seven instruments: a demographic questionnaire; the Individualised Neuromuscular
Quality of Life (INQoL); the Watts Sexual Function Questionnaire (WSFQ Male and Female); the Client Satisfaction Questionnaire
(CSQ-8); WHO (five) Wellbeing Index; the Brief Burns Depression Checklist (BDC); and the Neuromuscular Patients and HCPS Sexuality
Questionnaire. The participants included 144 people living with a NMD (termed the NMD group) and 134 people without a NMD
(termed the control group). The scores for sexual expression were significantly lower in the NMD group. The impact on QoL
was significantly higher in the NMD group. The frequency of sexual intercourse, the consistency of engagement in fulfilling
sexual activity, and to a lesser extent, the facilitation of sexual expression by healthcare providers, was found to significantly
reduce the deleterious impact of NMDs on QoL of the NMD group. The inhibition of sexual expression associated with the negative
attitudes of healthcare providers was predicted to significantly increase the deleterious impact of physical impairment on
the QoL of the NMD group. Sexual expression may help to diminish the deleterious impact of physical impairment on the QoL
of people living with a NMD, and interactions with healthcare providers may moderate the strength of this impact. The clinical
implications include healthcare providers being encouraged to facilitate sexual expression in all patients, irrespective of
their level of physical impairment. Patients with a NMD are encouraged to understand their psychosexual health rights and
to assert those rights when consulting with healthcare providers.
- Content Type Journal Article
- Category Original Paper
- Pages 1-15
- DOI 10.1007/s11195-011-9235-3
- Authors
- Shane M. O’Dea, Faculty of Health Sciences, The University of Sydney, PO Box 828, Melrose Park, SA 5039, Australia
- Russell P. Shuttleworth, School of Health & Social Development, Deakin University, Faculty of Health, Geelong Waterfront Campus, Geelong, VIC, Australia
- Nikki Wedgwood, Faculty of Health Sciences, The University of Sydney, C42 Cumberland Campus, Lidcombe, NSW 2141, Australia
- Journal Sexuality and Disability
- Online ISSN 1573-6717
- Print ISSN 0146-1044