AIMS AND OBJECTIVES: To explore experiences and informational needs regarding sexual health in men and women with epilepsy or multiple sclerosis.

BACKGROUND: Sexual health and well-being are dependent on access to comprehensive information about sexuality and good-quality sexual health care in an environment that affirms and promotes sexual health.

DESIGN: The study had a qualitative explorative design using focus group methodology and framework analysis to capture the patient perspective.

METHODS: We strategically selected 26 participants at a neurological clinic at a university hospital in Denmark and conducted four homogeneous focus group interviews: women with epilepsy (n = 8), men with epilepsy (n = 7), women with multiple sclerosis (n = 5) and men with multiple sclerosis (n = 6). We used the framework method for analysis and initially developed a matrix of disease versus gender before the authors triangulated their views and decided on the final themes.

RESULTS: We identified four themes and nine subthemes. Our main findings included insights on the impact of ignorance regarding sexual rehabilitation, demonstrating the importance of information in patients with sexual dysfunction related to chronic neurologic disease. The study expanded our understanding of sexual activity in the unpredictable body of epilepsy and the progressively changing body of multiple sclerosis. The participants agreed that they would have taken a more constructive path to solve their sexual problems if they had been aware of common responses to their disease.

CONCLUSIONS: Our study suggests that people with epilepsy or multiple sclerosis might be under-informed regarding the impact of their disease on their sexual health. We have shown how knowledge deficits put people at risk for symptoms of isolation, guilt, frustration and depression. Patient information is a modifiable factor that, if improved, might increase the quality of life for this group of patients.

RELEVANCE TO CLINICAL PRACTICE: Implementation of improved patient information at the neurological clinic is recommended.