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Disclosure strategies in adults with epilepsy when telling, “I have epilepsy”: The How2tell study
Author(s) -
Elliott Naomi,
Pembroke Sinead,
Quirke Mary,
Pender Niall,
Higgins Agnes
Publication year - 2019
Publication title -
epilepsia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.687
H-Index - 191
eISSN - 1528-1167
pISSN - 0013-9580
DOI - 10.1111/epi.16338
Subject(s) - epilepsy , psychosocial , psychology , construct (python library) , coping (psychology) , coding (social sciences) , developmental psychology , partial seizures , grounded theory , clinical psychology , psychiatry , qualitative research , statistics , mathematics , computer science , programming language , social science , sociology
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 PWEs on self‐disclosure in everyday social and life situations. How2tell is designed to benefit PWEs by empowering them with practical information about the process of telling another person, “I have epilepsy.”