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

Area of Science:

• Medical Sociology
• Psychology
• Public Health

Background:

• Epilepsy presents significant physical, social, and emotional challenges, requiring holistic care.
• While self-management in epilepsy is studied, the specific disease management process in Iran remains unclear.
• Effective epilepsy management involves integrated medical and psychosocial support to enhance patient quality of life.

Purpose of the Study:

• To determine the disease management process experienced by epilepsy patients in Iran.
• To explore the psychosocial aspects of living with and managing epilepsy.
• To identify factors influencing the quality of life for individuals with epilepsy in the Iranian context.

Main Methods:

• Qualitative study employing grounded theory methodology.
• Conducted in Isfahan, Iran, with 32 participants recruited through purposive, snowball, and theoretical sampling.
• Data collection involved 43 in-depth interviews, analyzed using the Strauss and Corbin method.

Main Results:

• Identified a psychosocial process (PSP) with three main themes: perception of threat to self-identity, effort to preserve self-identity, and burnout.
• The psychosocial impact generated key variables: 'perception of identity loss' and 'searching for self-identity'.
• Patients linked threats to self-identity and burnout to their disease management experiences.

Conclusions:

• Participants' experiences highlight the need for improved disease management to mitigate threats to self-identity and burnout.
• Recommendations include developing support programs and strategies to enhance public perception of epilepsy in Iran.
• Improving patient acceptance of their condition and preserving self-identity are crucial, alongside enhancing medical management.