J. Setchell1, C. Bryant1, T. Aplin1
1The University of Queensland, School of Health and Rehabilitation Sciences, Brisbane, Australia

Background: Sexuality and intimacy are important aspects of people’s lives and it is well known that sustaining a spinal cord injury commonly aligns with shifts in people’s sense of self, their intimate relationships, and their sexuality. Previous research into sexuality after spinal cord injury has predominantly been quantitative investigations into a range of medical interventions targeted towards supporting elements of biological sexual function (such as erectile function, reproduction). There has been less research focussed on supporting other aspects of sexuality, for example: optimising pleasure, rethinking able-bodied ideas about sex, individualising management, and conceptualising possible diverse roles for health professionals. As a result, research on sex and disability tends to be overly focussed on ‘faulty bodies’, solutions at an individual level, hierarchical notions of sexual function and is contextualised within norms derived from research with nondisabled people.

Purpose: To understand people with a spinal cord injuries’ lived experience and their perspectives of the support received for sexuality and how this area of practice could be enhanced.

Methods: We conducted semi-structured in-depth online interviews with 12 people with a spinal cord injury about their multidisciplinary experiences with rehabilitation and support for sexuality post-injury. Interviews were analysed discursively using prompting questions we derived from critical disability theorist Shuttleworth and colleagues’ extensive body of work on disability and sexuality. The questions were: (1) how is disabled people’s sexuality considered a problem to solve at the level of the individual in the context of rehabilitation? (2) in which ways is there a focus on how individuals stack up on a scale of sexual functioning? (3) how are norms derived from research with nondisabled people embedded in treatment? and (4) are there explicit and implicit concerns regarding treatment objectives?

Results: The topic of healthcare professional support for sexuality appeared important to participants with many interviews exceeding 1.5 hours. Support for sexuality appears to be limited and its application inconsistent. Mirroring the scientific literature, it was evident in participant interviews that rehabilitation often sought to regain normative able-bodied sexual function (e.g. erectile function, reproduction) despite this often not being a participant priority. Participants reported that current rehabilitation strategies and information intended to help adjust to and cope with their sexuality-related changes were inadequate. They expressed a need for more in-depth discussions and interventions.

Conclusion(s): Results suggest the importance of providing both 1) comprehensive sexuality support for people with spinal cord injuries throughout their continuum of care, and 2) broader advocacy to change assumptions underpinning current rehabilitation practices. Health care professionals have a responsibility to work with people with a spinal cord injury to meaningfully participate in and express their sexuality and to address ableist approaches to care.

Implications: A shift is needed in how sexuality and intimacy are considered in multidisciplinary rehabilitation settings, including physiotherapy. A move away from able-bodied normative assumptions about sex as physical function and/or reproductive ability is required towards a more versatile and complex understanding of sexuality as involving physiological, psychological, social and relational elements that vary between individuals and across contexts.

Funding, acknowledgements: National Australian PhD Scholarship (Ms Bryant), NHMRC Fellowship (Dr Setchell). The University of Queensland provided project funds.

Keywords: sexuality, disability, critical qualitative research

Topic: Disability & rehabilitation

Did this work require ethics approval? Yes
Institution: The University of Queensland
Committee: Human Ethics Committee
Ethics number: 2019002292

All authors, affiliations and abstracts have been published as submitted.

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