Laybourne Anne H, Morgan Myfanwy, Watkins Sarah H, Lawton Rebecca, Ridsdale Leone, Goldstein Laura H
King's College London, Institute of Psychiatry, Psychology, and Neuroscience, De Crespigny Park, London SE5 8AF, United Kingdom.
King's College London, Division of Health & Social Care Research, Faculty of Life Sciences & Medicine, Addison House, Guy's campus, London SE1 1UL, United Kingdom.
Epilepsy Behav. 2015 Nov;52(Pt A):159-64. doi: 10.1016/j.yebeh.2015.08.023. Epub 2015 Sep 29.
Epilepsy is a long-term condition that requires self-management, but currently, there is no well-evaluated epilepsy self-education or self-management intervention in the United Kingdom (UK).
The aim of this study was to examine the views and experiences of the first participants of the Self-Management in epILEpsy UK (SMILE UK) program to assist the development of a full trial.
In-depth semistructured interviews and group discussions were conducted with 10 people with poorly controlled epilepsy to explore their views and experiences of the self-management program. Interviews were audio-recorded, transcribed, and analyzed thematically.
All participants viewed the program positively. Three themes emerged: i) peer support was experienced through knowledge sharing, disclosure of experiences, and exchange of contact details; ii) participants felt better equipped to enter discussions with doctors and other health-care professionals about their condition; and iii) participants reported an improvement in their personal life through increased confidence to live with epilepsy and acceptance of their diagnosis.
A brief group self-management intervention increased knowledge and confidence in managing epilepsy.
癫痫是一种需要自我管理的长期病症，但目前在英国，尚无经过充分评估的癫痫自我教育或自我管理干预措施。
本研究旨在调查英国癫痫自我管理（SMILE UK）项目首批参与者的观点和经历，以助力开展全面试验。
对10名癫痫控制不佳的患者进行了深入的半结构化访谈和小组讨论，以探究他们对自我管理项目的观点和经历。访谈进行了录音、转录，并进行了主题分析。
所有参与者对该项目评价积极。出现了三个主题：i）通过知识共享、经验披露和联系方式交换获得同伴支持；ii）参与者感觉更有能力就自身病情与医生及其他医疗保健专业人员展开讨论；iii）参与者报告称，通过增强与癫痫共存的信心和接受诊断，个人生活有所改善。
简短的小组自我管理干预增加了管理癫痫的知识和信心。
