Exploring the sexual lived experiences and recommendations for interventions among women with Spinal Cord Injury: A Participatory Action Research Study

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.