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Women’s experiences of sexuality after spinal cord injury: a UK perspective

Abstract

Study design

Cross-sectional phenomenological qualitative study.

Objectives

To investigate women’s experience of sexuality after spinal cord injury (SCI) with a focus on rehabilitation and manging practical impact.

Setting

Women with SCI living in the community in United Kingdom (UK).

Methods

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.

Results

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.

Conclusions

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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Acknowledgements

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.

Authors contributions

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.

Author information

Correspondence to Helen Thrussell.

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Conflict of interest

The authors declare that they have no conflict of interest.

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