Background: International research has shown that sexual health can be significantly impacted following acquired brain injury (ABI), with studies stressing the importance of addressing sexuality in brain injury rehabilitation. However, few Swedish studies, which tend to focus on stroke, have addressed this issue. This creates a gap that the present dissertation seeks to fill.
Purpose: The overarching aim of this dissertation is to explore perceived sexual health and the need for sexuality-related information among individuals with ABI, as well as the views of professionals on integrating sexuality into brain injury rehabilitation in Sweden. More specifically, the dissertation aims to examine the extent to which individuals with ABI report changes in sexuality, the perceived need for sexuality-related information, and the degree to which such issues have been addressed during rehabilitation. In addition, the dissertation explores the experiences of rehabilitation professionals, including their reflections on addressing sexuality.
Methods: This dissertation comprises four studies. The first two studies are based on a cross-sectional survey conducted in 2018 and 2019 with 250 individuals (110 females and 140 males) who had participated in ABI rehabilitation between 2014 and 2016. Participants were diagnosed with ABI resulting from subarachnoid hemorrhage, trauma, infection, or anoxia as adults. The second set of studies (Articles 3 and 4) is based on qualitative data collected through seven focus groups, two dyadic interviews, and two individual interviews with 40 professionals from nine Swedish rehabilitation facilities. All interviews were conducted digitally and analyzed using reflexive thematic analysis.
Results: The results indicate that nearly 80% of participants had resumed sexual activity, and significantly more males (84%) than females (69%). Many reported changes in sexual functions, such as reduced erectile function (51%), sexual desire (63%), and orgasm (38%). Furthermore, individuals reporting sexual function impairments were also more likely to experience other invisible impairments, such as memory issues, fatigue, and bladder or bowel problems. Participants reported that sexuality aspects were seldom included in their rehabilitation. Professionals had asked about sexuality according to significantly more males (29%) than females (16%), and only 3% had received individual counseling. However, sexuality for the individual (80%), the relationship (91%) and intimacy (95%) were important to participants, with no significant gender differences.
In the qualitative studies, four themes were developed in each article. Article 3 included the following themes: “Sexual health in brain injury rehabilitation: The influence of healthcare professionals' attitudes”, “Insights about sexuality concerns gained from working in brain injury rehabilitation”, “Professionals need reinforcement”, and “Dilemmas and finding ways to support patients’ sexual health”. These themes reflect both the recognition of the importance of sexual health and a lack of preparedness among staff.
In Article 4, using the PLISSIT model as an analytical lens, the following themes were identified: “Navigating permission in practice: Professionals’ insights and observed gaps in PLISSIT implementation”, “Empathetic information sharing: Professionals’ strategies for limited information provision, need confirmation, and effective questioning”, “Collaboration related to specific suggestions: Professionals’ reflections on interdisciplinary approaches to tailored sexual health interventions”, and “Referral pathway ambiguity: Professionals navigating unclear processes for intensive sexual health therapy”. The findings highlight structural challenges and the need for clearer routines to support staff in addressing sexuality in rehabilitation settings.
Conclusion: The findings suggest that individuals with both visible and invisible impairments following ABI experience significant changes in relation to sexuality concerns. However, few reported that the issue was addressed during rehabilitation. The qualitative studies revealed that while professionals recognize the importance of addressing sexual health, they often feel inadequately prepared and face challenges in integrating sexuality into rehabilitation due to lack of structure, time constraints, and potential discomfort. Future interventions should incorporate both patient and professional perspectives to enhance sexual health within rehabilitation for individuals with ABI.