Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Wolfe, Dalton L.

2nd Supervisor

Orchard, Treena

Co-Supervisor

Abstract

Most sexual rehabilitation programs for women with Spinal Cord Injury (SCI) focus on reproduction and fertility, to the exclusion of other aspects of such as intimacy and pleasure. Given this, there is a lack of practical knowledge and resources about sexuality that target the needs of women with SCI. Interventions focused on a more holistic approach to sexuality are also lacking throughout the current SCI rehabilitation programs. The purpose of this qualitative study was to explore the sexuality lived experience, needs, and priorities of women with SCI, document the women’s educational needs and the features of an intervention they would design, and collaborate with key stakeholders to shed light on how women’s sexuality can be best addressed in rehabilitation. This study used participatory action research which involved working with an advisory research team (three women with lived experience and two sexual health clinicians) who were involved in the research from the beginning stages. Fifteen women with SCI (13 with traumatic or non-traumatic SCI and 2 with congenital spine conditions) from different Canadian provinces participated in semi-structured interviews. Thematic analysis revealed that participants experienced sexuality as a critical aspect of their relationship with themselves. They discussed grief resulting from change or loss of sensations and vulnerability as part of their sexuality journeys after SCI. The women also discussed changes to the body after SCI, body-exploration, and adjusting to the new body. Female participants also described their experiences of sexual intimacy with partners. In terms of educational needs, participants expressed a need for practical knowledge about sexuality that they could access on their own as well as learning in virtual group sessions with other women with SCI and access to experts and peer mentors. The findings contribute significant data to rehabilitation providers and researchers and advances the development of holistic sexuality interventions for women with SCI.

Summary for Lay Audience

Sexuality often plays a minor role in the rehabilitation process compared to the emphasis on other areas of rehabilitation which leaves women feeling unprepared for learning how to approach their sexuality after SCI. If sexuality is addressed during rehabilitation, the focus is often on reproduction and fertility, which excludes other aspects of sexuality such as pleasure and orgasm. Thus, there is a lack of practical, holistic knowledge and resources about sexuality that target the needs of women with SCI in rehabilitation settings and beyond. This study focused on exploring the sexuality lived experience of women with SCI and documenting the women’s educational needs as well as the features of an intervention they would design. To accomplish those objectives, the researcher worked collaboratively with an advisory research team which comprised of three women with lived experience of SCI and two sexual health clinicians to gather their insights regarding the research from the beginning. Fifteen women with SCI (13 with traumatic or non-traumatic SCI and 2 with congenital spine conditions) from different Canadian provinces participated in semi-structured interviews. The findings show that sexuality is an important aspect of women’s relationship with themselves. They also experienced sexuality in a holistic way and valued intimacy, touch, and a deeper connection with their partners. The women also discussed the impact of SCI on their bodies and the importance of taking the time to explore and adjust to the body after the injury. In terms of educational needs, participants expressed a need for practical knowledge about sexuality that they could access on their own and they wanted to learn from and alongside other women who share their lived experience. They also wanted access to sexuality experts and peer mentors who could provide one-on-one guidance. The findings contribute to the development of practical resources that can be used as part of a sexual rehabilitation programs and disseminated to community SCI organizations.

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