Cross-sectional phenomenological qualitative study.
To investigate women’s experience of sexuality after spinal cord injury (SCI) with a focus on rehabilitation and manging practical impact.
Women with SCI living in the community in United Kingdom (UK).
Participants were recruited via three UK SCI centres, ensuring tetraplegia, paraplegia and cauda equina syndrome representation. Single semi-structured interviews exploring individual’s experiences around sexuality following SCI were recorded and transcribed for thematic analysis.
Twenty-seven women aged 21–72 years, sexually active since SCI were interviewed, each lasting 17–143 min (mean 55 min). Six key themes emerged: physical change, psychological impact, dependency, relationships and partners, post injury sexual life and sexuality rehabilitation.
Sexuality remains an important, valued aspect of female identity following SCI; sexual activity continues and though altered remains enjoyable and rewarding. Sexuality rehabilitation should commence early, preparing women for altered sexual sensation, disclosure of altered sexual function to partners, and encouraging early self-exploration. Techniques optimising continence management in preparation for and during sex should be taught. Participants identified a need for women-only education and support groups, increased peer support, self-esteem, communication and social skills training and even fashion advice and pampering sessions during rehabilitation. Support and education for partners are needed. Staff require support to be knowledgeable and confident in addressing women’s sexuality needs. Use of the Ex-PLISSIT model for psychosexual support could help staff to better meet these needs.
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Parker MG, Yau MK. Sexuality, identity and women with spinal cord injury. Sex Disabil. 2012;30:15–27.
MacRae N. Fact sheet: sexuality and the role of occupational therapy. The American Occupational Therapy Association, Inc. 2013. https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/Facts/Sexuality
Kreuter M, Taft C, Siösteen A, Biering-Sørensen F. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord. 2011;49:154–60.
Westgren N, Hulting C, Levi R, Seiger A, Westgren M. Sexuality in women with traumatic spinal cord injury. Acta Obstet Gynecol Scand. 1997;76:977–83.
Harrison J, Glass CA, Owens RG, Soni BM. Factors associated with sexual functioning in women following spinal cord injury. Paraplegia. 1995;33:687–92.
Lee S, Fenge L-A. Sexual well-being and physical disability. Br J Soc Work. 2016;46:2263–81.
Ferreiro-Velasco ME, Barca-Buyo A, de la Barrera SS, Montoto-Marqués A, Vázquez XM, Rodríguez-Sotillo A. Sexual issues in a sample of women with spinal cord injury. Spinal Cord. 2005;43:51–55.
Forsythe E, Horsewell JE. Sexual rehabilitation of women with a spinal cord injury. Spinal Cord. 2006;44:234–41.
Rees PM, Fowler CJ, Maas CP. Sexual function in men and women with neurological disorders. Lancet. 2007;369:512–25.
Jackson AB, Wadley V. A multicenter study of women’s self-reported reproductive health after spinal cord injury. Arch Phys Med Rehabil. 1999;80:1420–8.
Anderson KD, Borisoff JF, Johnson RD, Stiens SA, Elliott SL. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord. 2007;45:328–37.
Kreuter M, Siösteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. J Rehabil Med. 2008;40:61–69.
Lombardi G, Del Popolo G, Macchiarella A, Mencarini M, Celso M. Sexual rehabilitation in women with spinal cord injury: a critical review of the literature. Spinal Cord. 2010;48:842–9.
Taleporos G, McCabe MP. Physical disability and sexual esteem. Sex Disabil. 2001;19:131–48.
Otero-Villaverde S, Ferreiro-Velasco ME, Montoto-Marqués A, Salvador de la Barrera S, Arias-Pardo AI, Rodriguez-Sotillo A. Sexual satisfaction in women with spinal cord injuries. Spinal Cord. 2015;53:557–60.
Fritz HA, Dillaway H, Lysack CL. “Don’t think paralysis takes away your womanhood”: sexual intimacy after spinal cord injury. Am J Occup Ther. 2015;69:1–10.
Kreuter M. Spinal cord injury and partner relationships. Spinal Cord. 2000;38:2–6.
Nelms T. Phenomenological philosophy and research. In: De Chesney M, editor. Nursing research using phenomenology. 1st ed. New York: Springer Publishing Company; 2015. p. 6.
Saunders S, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualisation and operationalization. Qual Quant. 2018;52:1893–907.
Spencer L, Ritchie J, O’Connor W. Analysis: practices, principles and processes. In: Ritchie J, Lewis J, editors. Qualitative research practice: a guide for social science students and researchers. 1st ed. London: SAGE Publications; 2003. p. 212.
Cramp J, Connolly M, Cosby J, Ditor D. The impact of urinary incontinence on sexual function and sexual satisfaction in women with spinal cord. Sex Disabil. 2014;32:397–412.
Klebine PL, Lindsey LL, Rivera P. Sexuality for women with spinal cordinjury. SCI Psychosoc Process. 2005;18:27–31.
Davis S, Taylor B. From PLISSIT to Ex-PLISSIT. In: Davis S, editor. Rehabilitation: the use of theories and models in practice. 1st ed. Edinburgh: Churchill Livingstone; 2006. p. 101–29.
This study was funded through a Stoke Mandeville – Masson Research Award, Stoke Mandeville Spinal Research Trust, Stoke Mandeville Hospital, UK and was hosted by Buckinghamshire New University, where MC was Senior Lecturer when funding was awarded.
HT (research associate) was responsible for designing the research protocol, recruitment of participants, data collection and analysis and writing up the study for publication. MC (chief investigator) was responsible for conceiving the research question, acquiring funding, designing the research protocol, data analysis and writing up the study for publication. AG was responsible for assisting in the design of the study, assisting in the data analysis and approving the write-up of the study. AG was responsible for assisting in the design of the study, recruitment at one research site, assisting in data analysis and approving the write-up of the study. MD was responsible for assisting in the design of the study, data analysis and approving the write-up of the study. RK was responsible for assisting in the design of the study, recruitment at one research site, assisting in data analysis and approving the write-up of the study. TG was responsible for assisting in the design of the study, assisting in data analysis and approving the write-up of the study.
Conflict of interest
The authors declare that they have no conflict of interest.