Abstracts

Rationale: Numerous studies have investigated disclosure and epilepsy; however, few have explored the strategies that people with epilepsy (PWE) use in the process of telling another person about their epilepsy. The aim of the How2tell study is to identify the strategies that adult PWE (18+ years) use in the process of telling people about their epilepsy in everyday social, personal and work situations. These strategies provide the evidence-base for a self-management educational package using multi-media resources including an app, to support PWE in telling people 'I have epilepsy' across a range of situations that present in everyday life. Methods: Using a grounded theory approach, in-depth interviews explored PWE's first-hand experiences of self-disclosure (or not); iterative and comparative data analysis identified the core strategies. A sampling matrix was used to ensure that adult PWE with different life experiences and situations relating to i) gender, ii) age, iii) employment status, iv) personal relationship, v) family relationship, vi) support group involvement, and vii) seizure frequency were included. Given the many variables and psycho-social issues associated with epilepsy, demographic details and validated measures including QOLIE-10-P, Coping Inventory of Stressful Situations and Patient Health Questionnaire were used to profile participants. Ethical approval was granted by the university's Research Ethics Committee; all participants gave written informed consent before taking part. Results: Forty-nine adults with epilepsy participated. Participants reported using a range of practical strategies related to: decision-making for why to tell; weighing up who needs-to-know and when to tell; how to construct the message for the moment of disclosure; tailoring the message to different audience needs; telling to make it 'ordinary'; dealing with other people's reactions; and, identifying opportunities for telling. For example, one strategy for creating an opportunity to tell, involved taking medications openly in front of the other person as a prompt to start a conversation about telling. If the person showed interest and asked questions, then the PWE told about their epilepsy; however, if the person showed no interest or didn't ask questions, in those situations the PWE did not tell. Conclusions: PWE use a repertoire of different strategies during the process of self-disclosure about their epilepsy. The significance of these findings is they are used to inform the How2tell multi-media educational resources for people with epilepsy, by people with epilepsy, on self-disclosure in everyday social and life situations. The development of the How2tell app adds to the range of apps currently in use in managing epilepsy the smartphone way, and will be of benefit to PWE empowering them with practical knowledge about the process of telling another person 'I have epilepsy'. Funding: How2tell study is funded by Epilepsy Ireland/Health Research Board (Grant No. MRCG/2013/6)