"You feel a bit unsexy sometimes": The psychosocial impact of a spinal cord injury on sexual function and sexual satisfaction

The World Health Organisation identifies sexual health as a fundamental human right for all individuals, yet people living with a disability often face exclusion from active sexuality and inaccurate assumptions of asexuality. Though sexual activity can be integral to returning to satisfactory function after injury or illness, it is often given limited attention in rehabilitation. Low sexual satisfaction rates are seen in older adults with long-term SCI, yet re-engaging with sexual activity contributes towards greater overall quality of life for spinal cord injured individuals. People who adapt to their injury and maintain a satisfying sex life report better overall quality of life and life satisfaction; sexual function should therefore be a primary consideration for individuals living long-term with SCI. Despite the evident importance of engagement with sex post-injury, sexual health and satisfaction continue to be under-addressed for this population. Part of the challenge relates to difficulty providing and integrating adequate resources and education into rehabilitation. Quantitative research has considered physiological implications and barriers impacting sexual functioning following injury; however, qualitative research is more limited and shows that inadequacies in sexual support services can result in reluctance and awkwardness in initiating discussion about sex, limiting requests for assistance. Distinguishing barriers and facilitators for people living in the community (not currently in rehabilitation) and linking these with community-led recommendations for intervention development would provide a foundation for enhanced service provision. It is vital that individuals have accessible support and targeted psychoeducational provision around sexuality post-injury, including during inpatient and outpatient rehabilitation. This qualitative study aimed to explore community-based perceptions of barriers and facilitators impacting sexual activity and satisfaction post-SCI.

Prior literature emphasizes sexual health as a human right and highlights that people with disabilities face societal assumptions of asexuality and exclusion from sexuality. Sexual activity is integral to rehabilitation outcomes and overall quality of life after SCI, yet is under-addressed in services. Quantitative studies have focused on physiological aspects and predictors of sexual function after SCI, while qualitative evidence is limited and points to inadequacies in sexual support services contributing to discomfort and avoidance in seeking help. Media influences, personal autonomy, communication and relationship dynamics have been identified as key domains affecting psychosexual adjustment after SCI. The literature also suggests that sustained relationships are associated with higher sexual satisfaction, and that body image changes (e.g., weight gain, scarring) and continence concerns can reduce sexual confidence and participation. Calls exist for improved sexual education within rehabilitation, including tailored psychosexual interventions and support across inpatient and outpatient phases.

Design: Qualitative semi-structured interview study analyzed via inductive Thematic Analysis. Pre-registration: Research Registry (No. 6979). Setting: Community-dwelling individuals with SCI in England, UK. Participants: Purposive sampling via Spinal Injury Case Management Ltd. Inclusion criteria: diagnosis of SCI per ISNCSCI; age >18; living with SCI in the community for ≥18 months; English verbal proficiency. Exclusion: current treatment for cancers affecting the spinal cord or clinically diagnosed mental health condition. Sample: N=20 (15 males, 5 females), ages 25–65 years (M=49.95, SD=13.42). Materials: An 8-item semi-structured interview schedule developed from psychosexual literature focusing on media influences, personal autonomy, and communication/relationship dynamics. Procedure: Recruitment via email lists; electronic consent and demographics completed prior to interview. Interviews conducted face-to-face (n=4) or via virtual platform (n=16); audio-recorded; duration 30–120 minutes (M=65.15, SD=26.29). Participants informed of voluntariness, confidentiality, and right to pause/stop. Data analysis: Targeted initial recruitment of 10 participants with a stopping criterion of three for saturation; no new information after interview 17; criterion tested for three further interviews confirming saturation. Verbatim transcription followed by Braun & Clarke’s six-step thematic analysis: familiarization, coding, theme searching, reviewing, naming, and reporting. Initial codes (barriers and facilitators) were grouped into higher-order themes. Inter-rater reliability using Miles & Huberman’s formula yielded 91% agreement between first and last authors; disagreements resolved via discussion and reference to field notes/transcripts. Ethics: Approved by University of Reading School of Psychology Ethics Committee (PWEC2020/47 P). Written informed consent obtained; BPS Code of Human Research Ethics (2021) followed.

• Six inductive themes describing psychosocial barriers and facilitators of sexual function and satisfaction post-SCI: (1) Internalising societal views and stigmatisation; (2) Diminished sexual confidence; (3) Navigating communication; (4) Managing relationship dynamics; (5) Lack of sexual support provision; (6) Intervention development recommendations. - Internalising societal views: Media and societal ableist narratives marginalize sexuality of disabled people, reducing self-esteem and perceived attractiveness. - Diminished sexual confidence: Early post-injury sexual experiences evoked anxiety; body image concerns (e.g., weight gain, catheters) reduced sexual self-esteem; reframing sex to include intimacy beyond penetration helped. - Navigating communication: Open, honest communication with partners facilitated sexual satisfaction; initiating discussions with new partners and with healthcare professionals was often avoided due to fear of judgment. - Managing relationship dynamics: Partner caregiving roles intertwined with sexual/intimate roles; concerns about meeting partner’s sexual needs were prominent; separating caregiver and partner roles and focusing on mutual satisfaction supported relationship stability. - Lack of sexual support provision: Participants reported insufficient sexual health education and support during inpatient and especially outpatient phases; difficulty accessing knowledgeable, approachable clinicians post-discharge. - Intervention recommendations: Desire for tailored, private, accessible educational resources across inpatient and outpatient phases; preference for one-to-one over group formats; suggestion to develop targeted written materials. - Additional study metrics: Data saturation achieved by interview 17; inter-rater reliability for coding was 91%.

Findings address the research aim by delineating key psychosocial barriers (societal stigma, reduced sexual/body confidence, communication difficulties, caregiving-related role changes, and gaps in sexual health services) and facilitators (partner involvement, open communication, reframing intimacy, individualized education) affecting sexual function and satisfaction after SCI. The results reinforce that negative media portrayals and myths of asexuality impede social and relational opportunities for people with SCI, highlighting the need for societal education. Managing the interplay between caregiving and partner roles is crucial for relationship stability and sexual/intimate satisfaction; prioritizing partner satisfaction and maintaining intimacy can mitigate caregiving strain. Effective communication within partnerships enhances sexual satisfaction, and identifying comfortable, competent healthcare providers may reduce avoidance in clinical conversations about sex. Addressing body image and continence concerns and providing psychosexual education specific to SCI are recommended to bolster sexual confidence. Overall, the study underscores the importance of individualized, continuous sexual health support spanning inpatient to community care, with partner inclusion and privacy-respecting modalities.

Sexual function and satisfaction are challenging yet vital domains of rehabilitation for people living with SCI. This study identified six psychosocial themes that encapsulate key barriers and facilitators, emphasizing the impact of societal stigma, communication, relationship dynamics, and service provision gaps. The findings offer a qualitative baseline for designing tailored psychosexual interventions, recommending one-to-one, partner-inclusive, and privacy-oriented educational supports delivered across inpatient and outpatient settings. Future work should develop and evaluate SCI-specific psychosexual programs and resources that directly target identified barriers, enhance communication skills, and support couples in balancing caregiving and intimacy.

• Gender imbalance (predominantly male), though reflective of UK SCI demographics, may limit transferability to female and gender-diverse populations. - All participants completed inpatient rehabilitation in spinal units across England; experiences may differ in other regions or healthcare systems. - Future research should explore cross-cultural perspectives and include broader sexual orientations and identities (e.g., LGBTQ+ populations).