Determining the disease management process for epileptic patients: A qualitative study

Nazafarin Hosseini, Farkhondeh Sharif, Fazlollah Ahmadi, Mohammad Zare


Background: Epilepsy exposes patients to many physical, social, and emotional challenges. Thus, it seems to portray a complex picture and needs holistic care. Medical treatment and psychosocial part of epilepsy remain central to managing and improving the patient’s qualify of life through team efforts. Some studies have shown the dimensions of self‑management, but its management process of epilepsy patients, especially in Iran, is not clear. This study aimed to determine the disease management process in patients with epilepsy in Iran.

Materials and Methods: This qualitative approach and grounded theory study was conducted from January 2009 to February 2012 in Isfahan city (Iran). Thirty‑two participants were recruited by the goal‑oriented, and snowball sample selection and theoretical sampling methods. After conducting a total of 43 in‑depth interviews with the participants, the researchers reached data saturation. Data were analyzed using Strauss and Corbin method.

Results: With a focus on disease management process, researchers found three main themes and seven sub‑themes as a psychosocial process (PSP). The main themes were: perception of threat to self‑identity, effort to preserve self‑identity, and burn out. The psychosocial aspect of the disease generated one main variable “the perception of identity loss” and one central variable “searching for self‑identity.”

Conclusions: Participants attributed threat to self‑identity and burn out to the way their disease was managed requiring efforts to preserve their identity. Recommendations consist of support programs and strategies to improve the public perception of epilepsy in Iran, help patients accept their condition and preserve self‑identity, and most importantly, enhance medical management of epilepsy.



Epilepsy; grounded theory; Iran; management; qualitative research; seizure

Full Text:



McCagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning. Epilepsy Res 2009;86:1‑14.

Jacoby A, Wang W, Vu TD, Wu J, Snape D, Aydemir N, et al. Meanings of epilepsy in its sociocultural context and implications for stigma: Findings from ethnographic studies in local communities in China and Vietnam. Epilepsy Behav 2008;12:286‑97.

Hosseini N, Sharif F, Ahmadi F, Zare M. Patients’ perception of epilepsy and threat to self‑identity: A qualitative approach. Epilepsy Behav 2013;29:228‑33.

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.

Hovinga CA, Asato MR, Manjunath R, Wheless JW, Phelps SJ, Sheth RD, et al. Association of non‑adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. Epilepsy Behav 2008;13:316‑22.

Hosseini, N, Sharif F, Ahmadi F, Zare M. Striving for balance: Coping with epilepsy in Iranian patients. Epilepsy Behav 2010;18:466‑71.

Edward K, Cook M, Giandinoto JA. An integrative review of the benefits of self‑management interventions for adults with epilepsy. Epilepsy Behav 2015;45:195‑204.

Fraser RT, Johnson EK, Miller JW, Temkin N, Barber J, Caylor L, et al. Managing epilepsy well: Self‑management needs assessment. Epilepsy Behav 2011;20:291‑8.

Sattoe JN, Bal MI, Roelofs PD, Bal R, Miedema HS, van Staa A. Self‑management interventions for young people with chronic conditions. A systematic overview. Patient Educ Couns 2015;98:704‑15.

Shegog R, Bamps YA, Patel A, Kakacek J, Escoffery C, Johnson EK, et al. Managing epilepsy well: Emerging e‑Tools for epilepsy self‑management. Epilepsy Behav 2013;29:133‑40.

Sample P, Ferguson P, Wagner JL, Elisabeth Pickelsimer E, Selassie AW. Experiences of persons with epilepsy and their families as they look for medical and community care: A focus group study from South Carolina. Epilepsy Behav 2006;9:649‑62.

Streubert H, Carpenter D. Qualitative Research in Nursing: Advancing the Humanistic Imperative. Philadelphia: Lippincott Williams and Wilkins; 2007. p. 124.

Munhall P. Nursing Research: A Qualitative Perspective. Philadelphia: Jones and Bartlett; 2011. p. 244.

Corbin J, Strauss A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 3rd ed. Thousand Oaks, CA: Sage; 2008. p. 73.

Telford, K, Kralik D, Koch T. Acceptance and denial: Implications for people adapting to chronic illness: Literature review. J Adv Nurs 2006;55:457‑64.

Walsh M, Crumble A. Watson’s Clinical Nursing and Related Sciences. London: Baillière Tindall; 2007. p. 726.

Aujoulat I, Marcolongo R, Bonadiman L, Deccache A. Reconsidering patient empowerment in chronic illness: A critique of models of self‑efficacy and bodily control. Soc Sci Med 2008;66:1228‑39.

Kralik D, Koch T, Price K, Howard N. Chronic illness self management: Taking action to create order. J Clin Nurs 2004;13:259‑67.

Jacoby A, Snape D, Baker GA. Epilepsy and social identity: The stigma of a chronic neurological disorder. Lancet Neurol 2005;4:171‑8.

Lake AJ, Staiger PK. Seeking the views of health professionals on translating chronic disease self‑management models into practice. Patient Educ Couns 2010;79:62‑8.

Bellon M, Pfeiffer W, Maurici V. Choice and control: How involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector. Epilepsy Behav 2014;37:227‑32.

Hosseini, N, Sharif F, Ahmadi F, Zare M. Disease‑based versus patient‑ based approach in epilepsy management from the patients’ point of view: A qualitative research. Life Sci J 2012;9:1983‑90.

KilInç 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.

Baskind R, Birbeck GL. Epilepsy‑associated stigma in Sub‑Saharan Africa: The social landscape of a disease. Epilepsy Behav 2005;7:68‑73.

Snape D, Wang W, Wu J, Jacoby A, Baker GA. Knowledge gaps and uncertainties about epilepsy: Findings from an ethnographic study in China. Epilepsy Behav 2005;14:172‑8.

Cooper JM, Collier J, James V, Hawkey CJ. Beliefs about personal control and self‑management in 30‑40 year olds living with Inflammatory Bowel

Kralik D. The quest for ordinariness: Transition experienced by midlife women living with chronic illness. J Adv Nurs 2002;39:146‑54.

Clarke J, James S. The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Soc Sci Med 2003;57:1387‑95.

Whitehead L. Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: A longitudinal qualitative study. Int J Nurs Stud 2006;43:1023‑31.


  • There are currently no refbacks.