Objective: To generate evidence-based knowledge about the strategies that adult people with epilepsy (PWEs) use in the process of telling others about their epilepsy.
Methods: In-depth, one-to-one interviews explored PWEs’ first-hand experiences of self-disclosure (or not), and grounded theory methods of inductive-deductive analysis were used to identify strategies used in disclosing. Interviews were audio-recorded, transcribed, coded, and independently recoded by two researchers using a coding framework specifically developed in this study. To account for maximum variation, PWEs (aged 18+ years) with different life experiences and situations relating to (1) gender, (2) age, (3) employment status, (4) personal relationships, (5) family relationship, (6) support group involvement, and (7) seizure frequency were included. Given the many variables and psychosocial issues associated with epilepsy, demographic details and validated measures including Quality of Life in Epilepsy-10-P, Coping Inventory of Stressful Situations-Adult, and Patient Health Questionnaire-9 were used to describe the characteristics of participants and to contextualize the results.
Results: Forty-nine adults with epilepsy participated. Data analysis revealed six interrelated categories (with subcategories) of the strategies that PWEs reported using in the process of disclosure: (1) concerns about disclosing; (2) weighing up who and when to tell; (3) opportunities for telling; (4) moment of disclosure—how to construct the message; (5) tailoring the message to audience needs—altering the message when telling family members, partner, friends, children, or employer and workplace colleagues; and (6) managing reactions by making it ordinary.
Significance: People with epilepsy use a range of different strategies during the process of disclosing their epilepsy. These strategies were used to inform the development of the How2tell multimedia self-management resource for people with epilepsy on self-disclosure in everyday social and life situations. How2tell is designed to benefit people with epilepsy by empowering them with practical information about the process of telling another person, “I have epilepsy.”