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Table 2 An example of the process of determining the spheres designed from participants’ experiences

From: Design and psychometric evaluation of epilepsy-related apathy scale (E-RAS) in adults with epilepsy: a sequential exploratory mixed methods design

Item

Category

Participants’ experiences

Criticizing and rejecting me by others reduces my motivation to treat my illness.

Motivation

I remember going to school. The time I was 15 years old. My friends didn’t let me join their circles. They rejected me. But I hoped I would be cured and my illness would be controlled. I did not lose my spirit. I had motivation for the future of my life.

I actively follow behaviors related to the dimensions of controlling my illness (such as preventing possible injuries during seizures and adhering to the therapeutic regimen).

Self-Regulatory

It is important for me to try to follow what my doctor tells me. I don’t ride a bicycle and I care not to get injured during a seizure.

Cooperation of others, I will explain the conditions/symptoms of my illness to them.

Cognition

When I meet someone like new colleagues or friends who do not know my condition, I tell them about the disease and its symptoms. I ask them to understand me and help me during the seizure.

Deprivation of social rights due to my illness has made me angry and frustrated me in continuing my social activities.

Emotional- Effective

I have long been looking for a job, but as soon as the employer understands that I have epilepsy, he doesn’t give me the job. I wanted to marry my favorite girl, but my illness prevented her family from agreeing. I’m nervous and desperate to do something.