Intensive Care Unit, University of Copenhagen, Rigshospitalet, Copenhagen, Denmark.
Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.
J Clin Nurs. 2018 Jul;27(13-14):2868-2876. doi: 10.1111/jocn.14378. Epub 2018 May 24.
To explore experiences and informational needs regarding sexual health in men and women with epilepsy or multiple sclerosis.
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.
The study had a qualitative explorative design using focus group methodology and framework analysis to capture the patient perspective.
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.
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.
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.
Implementation of improved patient information at the neurological clinic is recommended.
探讨癫痫或多发性硬化症患者的性健康体验和信息需求。
性健康和幸福感取决于能否获得全面的性知识信息以及在肯定和促进性健康的环境中获得高质量的性健康护理。
本研究采用定性探索性设计，使用焦点小组方法和框架分析来捕捉患者的观点。
我们在丹麦一所大学医院的神经科诊所进行了战略性选择，共招募了 26 名参与者，并进行了四次同质性焦点小组访谈：癫痫女性（n=8）、癫痫男性（n=7）、多发性硬化症女性（n=5）和多发性硬化症男性（n=6）。我们使用框架方法进行分析，在作者们对各自的观点进行三角验证并确定最终主题之前，最初开发了一个疾病与性别对照的矩阵。
我们确定了四个主题和九个子主题。我们的主要发现包括对性康复知识缺乏的影响的深入了解，这表明在与慢性神经系统疾病相关的性功能障碍患者中，信息的重要性。该研究扩展了我们对癫痫不可预测的身体和多发性硬化症不断变化的身体中的性活动的理解。参与者一致认为，如果他们了解常见的疾病反应，他们会采取更具建设性的方法来解决自己的性问题。
我们的研究表明，癫痫或多发性硬化症患者可能对其疾病对性健康的影响了解不足。我们展示了知识缺陷如何使人们面临孤立、内疚、沮丧和抑郁等症状的风险。患者信息是一个可改变的因素，如果加以改善，可能会提高这组患者的生活质量。
建议在神经科诊所实施改进的患者信息。
