Couples’ experiences with sexuality after spinal cord injury

Abstract

Purpose

To explore sexuality after spinal cord injury (SCI) from the perspectives of individuals with SCI and their romantic partners.

Methods

A sample of 8 Canadian adults with SCI (6 men, 2 women) and their partners participated in this study (N = 16). Semi-structured dyadic and individual interviews were conducted, discussions surrounding sexuality and intimacy were extracted, and a qualitative description of the interview data was performed using thematic analysis.

Results

Three major themes were identified: the changing definition of sex; emotions; and practical support. Couples’ conversations around the changing definition of sex after SCI addressed the taboo topic of sexuality and the importance of communication between couples, peers, and healthcare providers. Emotions included fears of losing intimacy, embarrassment in managing bladder and bowel interference, and acceptance in balancing being a romantic partner and a caregiver. Finally, couples reported challenges accessing practical support including medical interventions and sexual health nurses, but saw value in peer mentorship programs.

Conclusion

Couples explored a changing definition of sex following SCI that was complicated by the taboo nature of discussing sexuality, experienced a range of emotions throughout the recovery process, and had difficulties navigating the healthcare system for appropriate support.

IMPLICATIONS FOR REHABILITATION

• Healthcare professionals should promote discussion and provide support for sexuality following SCI, but during initial rehabilitation may be too early.

• Healthcare providers should prepare people with SCI and their partners for the inevitable trial-and-error process involved in sexual rehabilitation.

• Rehabilitation professionals could direct couples to SCI peer mentorship programs to help normalize the experiences and emotions of sexual rehabilitation.

Keywords:

• Spinal cord injury
• sexual rehabilitation
• couples
• sexuality
• intimacy

Acknowledgments

The authors would like to thank Jason for his insight on the design of the study, Matt for his help with the interview process.

Compliance with ethical standards

The authors have no relevant financial or non-financial interests to disclose. Informed consent was obtained from all participants prior to interviews. Approval was granted by the Ethics Committee of McGill University (No. 379-0118).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Craig H. Neilsen Foundation under Grant 541700.