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Disability, Doctors and Sexuality: Do Healthcare Providers Influence the Sexual Wellbeing of People Living with a Neuromuscular Disorder?

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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.

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Acknowledgments

We would like to acknowledge with gratitude the participants who so graciously completed the time consuming survey instruments; those people who generously invited people living with neuromuscular disorders to participate in the project and encouraged the research especially Mr David Jack (MD Foundation), Ms Penelope Hamilton (MDA QLD), Ms Pene Hodge (MDA NSW), Mr Paul Creedon (MDA SA), Ms Nicola Norman (MDA SA), Ms Amber Pyle (MDA SA), Mr John Gummer (MDA WA), and Ms Brianna O’Donnell (MDA WA). We also acknowledge Dr Frances Sommer Anderson PhD for kindly providing details about her 1970’s research that inspired this project; and The University of Sydney which partially funded the research via a scholarship.

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Authors and Affiliations

  1. Faculty of Health Sciences, The University of Sydney, PO Box 828, Melrose Park, SA, 5039, Australia

    Shane M. O’Dea

  2. School of Health & Social Development, Deakin University, Faculty of Health, Geelong Waterfront Campus, Geelong, VIC, Australia

    Russell P. Shuttleworth

  3. Faculty of Health Sciences, The University of Sydney, C42 Cumberland Campus, Lidcombe, NSW, 2141, Australia

    Nikki Wedgwood

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  1. Shane M. O’Dea
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  2. Russell P. Shuttleworth
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  3. Nikki Wedgwood
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Correspondence to Shane M. O’Dea.

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O’Dea, S.M., Shuttleworth, R.P. & Wedgwood, N. Disability, Doctors and Sexuality: Do Healthcare Providers Influence the Sexual Wellbeing of People Living with a Neuromuscular Disorder?. Sex Disabil 30, 171–185 (2012). https://doi.org/10.1007/s11195-011-9235-3

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