Disclosure strategies in adults with epilepsy when telling, "I have epilepsy": The How2tell study.
How2tell
adult
disclosure strategies
epilepsy
self-disclosure
Journal
Epilepsia
ISSN: 1528-1167
Titre abrégé: Epilepsia
Pays: United States
ID NLM: 2983306R
Informations de publication
Date de publication:
10 2019
10 2019
Historique:
received:
28
05
2019
revised:
22
08
2019
accepted:
22
08
2019
pubmed:
24
9
2019
medline:
15
4
2020
entrez:
24
9
2019
Statut:
ppublish
Résumé
To generate evidence-based knowledge about the strategies that adult people with epilepsy (PWEs) use in the process of telling others about their epilepsy. 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. 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. 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."
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
2048-2059Subventions
Organisme : The How2tell study was funded by Epilepsy Ireland and the Health Research Board
ID : MRCG/2013/6
Pays : International
Informations de copyright
Wiley Periodicals, Inc. © 2019 International League Against Epilepsy.
Références
Aydemir N, Trung DV, Snape D, Baker GA, Jacoby A, CREST Study Team. Multiple impacts of epilepsy and contributing factors: findings from an ethnographic study in Vietnam. Epilepsy Behav. 2009;16:512-20.
Tröster H. Disclose or conceal? Strategies of information management in persons with epilepsy. Epilepsia. 1997;38:1227-37.
Scambler G. Patient perceptions of epilepsy and of doctors who manage epilepsy. Seizure. 1994;3:287-93.
Omarzu J. A disclosure decision model: determining how and when individuals will self-disclose. Pers Soc Psychol Rev. 2000;4:174-85.
Charmaz K. Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press; 1991.
Aydemir N, Kaya B, Yıldız G, Öztura I, Baklan B. Determinants of felt stigma in epilepsy. Epilepsy Behav. 2016;58:76-80.
Kılınç S, Campbell C. “It shouldn't be something that's evil, it should be talked about”: a phenomenological approach to epilepsy and stigma. Seizure. 2009;18:665-71.
Epilepsy and stigma survey. Dublin, Ireland: Epilepsy Ireland; 2012. Available at: https://www.epilepsy.ie/sites/www.epilepsy.ie/files/imported/news/6DB5AFEF-C7E0-CF76-6D404932E8FAAE78.pdf. Accessed April 15, 2019.
Lee S-A, Lee B-I. Disclosure management behaviors in Korean adults with well-controlled epilepsy: their relation to perception of stigma. Epilepsy Behav. 2017;67:28-32.
Sleeth C, Drake K, Labiner DM, Chong J. Felt and enacted stigma in elderly persons with epilepsy: a qualitative approach. Epilepsy Behav. 2016;55:108-12.
Heersink M, Kocovski NL, MacKenzie MB, Denomme K, Macrodimitris S. Social anxiety and its psychosocial impact on the lives of people with epilepsy. Epilepsy Behav. 2015;51:286-93.
Aydemir N, Kaya B, Yıldız G. Development of the perceived stigma scale and the concealment of epilepsy scale for the Turkish population. Epilepsy Behav. 2018;80:1-4.
Saiki LS, Lobo ML. Disclosure: a concept analysis. J Adv Nurs. 2011;67:2713-22.
Kerr C, Nixon A, Angalakuditi M. The impact of epilepsy on children and adult patients’ lives: development of a conceptual model from qualitative literature. Seizure. 2011;20:764-74.
Aliasgharpour M, Dehgahn Nayeri N, Yadegary MA, Haghani H. Effects of an educational program on self-management in patients with epilepsy. Seizure. 2013;22:48-52.
Edward K-l, Cook M, Giandinoto J-A. An integrative review of the benefits of self-management interventions for adults with epilepsy. Epilepsy Behav. 2015;45:195-204.
Fraser RT, Johnson EK, Lashley S, et al. PACES in epilepsy: results of a self-management randomized controlled trial. Epilepsia. 2015;56:1264-74.
Laybourne AH, Morgan M, Watkins SH, Lawton R, Ridsdale L, Goldstein LH. Self-management for people with poorly controlled epilepsy: participants’ views of the UK Self-Management in epILEpsy (SMILE) program. Epilepsy Behav. 2015;52:159-64.
DiIorio C, Bamps Y, Walker ER, Escoffery C. Results of a research study evaluating WebEase, an online epilepsy self-management program. Epilepsy Behav. 2011;22:469-74.
May T, Pfafflin M. The efficacy of an educational treatment program for patients with epilepsy (MOSES): results of a controlled randomized trial. Epilepsia. 2002;43:539-49.
Bradley PM, Lindsay B, Fleeman N. Care delivery and self-management strategies for adults with epilepsy. Cochrane Database Syst Rev. 2016;2:CD006244.
Bautista RED. Understanding the self-management skills of persons with epilepsy. Epilepsy Behav. 2017;69:7-11.
Johnson EK, Fraser RT, Miller JW, et al. A comparison of epilepsy self-management needs: provider and patient perspectives. Epilepsy Behav. 2012;25:150-5.
England MJ, Liverman CT, Schultz AM, Strawbridge LM. Epilepsy across the spectrum: promoting health and understanding. A summary of the Institute of Medicine report. Epilepsy Behav. 2012;25:266-76.
Glaser BG. Emergence vs Forcing: Basics of Grounded Theory Analysis. Mill Valley, CA: Sociology Press; 1992.
Glaser BG. The Grounded Theory Perspective: Conceptualisation Contrasted With Description. Mill Valley, CA: CA Sociology Press; 2001.
Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52:1893-907.
Cramer JA, Perrine K, Devinsky O, Meador K. A brief questionnaire to screen for quality of life in epilepsy: the QOLIE-10. Epilepsia. 1996;37:577-82.
Endler N, Parker D. Coping Inventory for Stressful Situations (CISS): Manual. 2nd ed. Toronto, Canada: Multi Health Systems; 1999.
Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606-13.
31SPSS Statistics for Windows. Version 23.0. Armonk, NY: IBM; 2015.
NVivo Qualitative Data Analysis Software. Version 10. Melbourne, Australia: QSR International; 2012.
Glaser BG. The Grounded Theory Perspective: III. Theoretical Coding. Mill Valley, CA: Sociology Press; 2005.
Elliott N, Jordan J. Practical strategies to avoid the pitfalls in grounded theory research. Nurs Res. 2010;17:29-41.
Higgins A, Downes C, Varley J, et al. Patients with epilepsy care experiences: comparison between services with and without an epilepsy specialist nurse. Epilepsy Behav. 2018;85:85-94.
Pembroke S, Higgins A, Pender N, Elliott N. Becoming comfortable with “my” epilepsy: strategies that patients use in the journey from diagnosis to acceptance and disclosure. Epilepsy Behav. 2017;70:217-23.
Rawlings GH, Brown I, Stone B, Reuber M. Written accounts of living with epilepsy: a thematic analysis. Epilepsy Behav. 2017;72:63-70.
Robinson CA. Managing life with a chronic condition: the story of normalization. Qual Health Res. 1993;3(1):6-28.
Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171-8.
Herrmann LK, Welter E, Berg AT, Perzynski AT, Van Doren JR, Sajatovic M. Epilepsy misconceptions and stigma reduction: current status in Western countries. Epilepsy Behav. 2016;60:165-73.
Global Campaign Against Epilepsy. Out of the shadows: an introduction to the global campaign and its demonstration projects. Heemstede, the Netherlands: GCAE Secretariat; 2003. Available at: https://www.who.int/mental_health/management/en/GcaeBroEn.pdf. Accessed March 22, 2019.
Yennadiou H, Wolverson E. The experience of epilepsy in later life: a qualitative exploration of illness representations. Epilepsy Behav. 2017;70:87-93.