Abstract：
OBJECTIVE: Transition into adulthood and adult medical care is an important step in the life of young people with epilepsy. We aimed to gain a better insight into the lived experience of the transition to adulthood and adult medical care in epilepsy in Sweden, to improve future transitional care.
METHODS: A cross-sectional observational study with digital focus-group meetings and interviews with young people with epilepsy (16-22 years, n = 37) prior to, or after the transfer to adult care, or their primary caregivers if they had intellectual disability. We used reflexive thematic analysis to analyse the experiences and expectations on the transition to adulthood and adult medical care.
RESULTS: The results of the thematic analysis included four key areas during transition to adulthood and adult care for young persons with epilepsy: (I) worries on coming changes and future, (II) transfers are not smooth and adult care is less integrated, (III) epilepsy is part of a bigger picture, and (IV) parental roles change. In those with intellectual disability, parents experienced a stressful process and had to increase their efforts to coordinate all care contacts in adult care. Here, epilepsy was often experienced as a minor part of a more complex disease picture, where neurodevelopmental issues were often the primary concern.
CONCLUSIONS: Transition in epilepsy is often complex due to the large burden of co-occurring disease, specifically intellectual disability and neuropsychiatric diagnoses. Transfer to adult care is experienced as unplanned and participants experience uncertainty, indicating a need for an improved transition process. As effective interventions are known in other chronic diseases, future studies should focus on the evaluation of how these approaches can be feasible and effective in young people with epilepsy.
METHODS: A cross-sectional observational study with digital focus-group meetings and interviews with young people with epilepsy (16-22 years, n = 37) prior to, or after the transfer to adult care, or their primary caregivers if they had intellectual disability. We used reflexive thematic analysis to analyse the experiences and expectations on the transition to adulthood and adult medical care.
RESULTS: The results of the thematic analysis included four key areas during transition to adulthood and adult care for young persons with epilepsy: (I) worries on coming changes and future, (II) transfers are not smooth and adult care is less integrated, (III) epilepsy is part of a bigger picture, and (IV) parental roles change. In those with intellectual disability, parents experienced a stressful process and had to increase their efforts to coordinate all care contacts in adult care. Here, epilepsy was often experienced as a minor part of a more complex disease picture, where neurodevelopmental issues were often the primary concern.
CONCLUSIONS: Transition in epilepsy is often complex due to the large burden of co-occurring disease, specifically intellectual disability and neuropsychiatric diagnoses. Transfer to adult care is experienced as unplanned and participants experience uncertainty, indicating a need for an improved transition process. As effective interventions are known in other chronic diseases, future studies should focus on the evaluation of how these approaches can be feasible and effective in young people with epilepsy.
摘要：
目的：过渡到成年和成人医疗护理是癫痫年轻人生活中的重要一步。我们的目标是更好地了解瑞典癫痫患者向成年过渡和成人医疗的生活经历，改善未来的过渡护理。
方法：一项横断面观察性研究，其中包括数字焦点小组会议和对患有癫痫的年轻人的访谈（16-22岁，n=37)之前，或者转移到成人护理中心后，或他们的主要照顾者，如果他们有智力障碍。我们使用反身主题分析来分析向成年和成人医疗过渡的经验和期望。
结果：主题分析的结果包括向成年过渡期间的四个关键领域以及对癫痫患者的成人护理：（I）对即将到来的变化和未来的担忧，(二)转移不顺畅,成人护理一体化程度较低,（三）癫痫是一个更大的图片的一部分，(四)父母角色的变化。在那些智力残疾的人中，父母经历了一个紧张的过程,不得不加大努力来协调成人护理中的所有护理联系人.这里,癫痫通常是一个更复杂的疾病图片的一小部分，神经发育问题通常是首要关注的问题。
结论：由于共同发生的疾病负担很大，癫痫的转变通常很复杂，特别是智力障碍和神经精神诊断。转移到成人护理是无计划的，参与者经历不确定性，这表明需要改进过渡过程。作为其他慢性疾病的有效干预措施，未来的研究应侧重于评估这些方法如何在患有癫痫的年轻人中可行和有效.
方法：一项横断面观察性研究，其中包括数字焦点小组会议和对患有癫痫的年轻人的访谈（16-22岁，n=37)之前，或者转移到成人护理中心后，或他们的主要照顾者，如果他们有智力障碍。我们使用反身主题分析来分析向成年和成人医疗过渡的经验和期望。
结果：主题分析的结果包括向成年过渡期间的四个关键领域以及对癫痫患者的成人护理：（I）对即将到来的变化和未来的担忧，(二)转移不顺畅,成人护理一体化程度较低,（三）癫痫是一个更大的图片的一部分，(四)父母角色的变化。在那些智力残疾的人中，父母经历了一个紧张的过程,不得不加大努力来协调成人护理中的所有护理联系人.这里,癫痫通常是一个更复杂的疾病图片的一小部分，神经发育问题通常是首要关注的问题。
结论：由于共同发生的疾病负担很大，癫痫的转变通常很复杂，特别是智力障碍和神经精神诊断。转移到成人护理是无计划的，参与者经历不确定性，这表明需要改进过渡过程。作为其他慢性疾病的有效干预措施，未来的研究应侧重于评估这些方法如何在患有癫痫的年轻人中可行和有效.
