Phenomenological Approach of Epilepsy in Patients With Epilepsy (NCT02952456) | Clinical Trial Compass
CompletedNot Applicable
Phenomenological Approach of Epilepsy in Patients With Epilepsy
France30 participantsStarted 2016-09
Plain-language summary
Rationale : Persons with epilepsy have a greater risk of incurring accidental injury and a higher mortality risk than the general population.
The main objective of the study is to understand life experience of the disease or risks associated with epilepsy in patients with epilepsy, relatives of patients and bereaved families.
Study design: Qualitative study (study based on interviews) Population: Three groups will be interviewed: bereaved families, patients with epilepsy and relatives of patient. Bereaved family: relatives who contact the French sentinel network "Réseau Sentinelle Mortalité Epilepsie" (RSME) notifying an epilepsy-related death (regardless the cause of the death and the timeframe between death and interview). Patients with epilepsy: patients having a secure diagnostic of epilepsy from 15 years old to 65 years old. Relatives of patients with epilepsy: spouse/husband or parents invited by a patient with epilepsy to participate to the interview who consent to participate.
Method: Semi structured in-depth interviews will be conducted by an experienced qualitative psychologist in face to face, at home, at the hospital or at any other place (depending on the choice of the participants). The interview topic guide will be centered on participants'personal experience. Interviews will be digitally recorded and will be transcribed by a secretary.
The results of this study will be integrated in educational therapeutic programs regarding prevention of risks related to epilepsy.
Who can participate
Age range
15 Years – 65 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Bereaved family: Parents or spouse/husband who contact the coordination unit of the RSME in order to notify an epilepsy related death and who consent for an interview regardless of the cause of death and timeframe between death and interview.
* Patients with epilepsy: Patients having a secure diagnostic of epilepsy with active epilepsy (treated or not) or in remission under treatment or without treatment aged from 15 years to 65 years old.
* Relatives of patients with epilepsy: Parents or spouse/husband invited by a patient with epilepsy to participate to the interview who consent to participate.
Exclusion Criteria:
* Patients or relatives with learning difficulties
* Refusal of participation of the patients or relatives or legal representatives for patients aged under 18 years old
* Refusal for audio recording
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This trial used interviews with a psychologist to explore how people with epilepsy experience their condition — what kind of insights or findings came out of that research, and could they be relevant to how I'm currently coping with my diagnosis?
2Since this study focused on the personal and emotional experience of living with epilepsy rather than testing a medication or procedure, how does this type of qualitative research actually influence the way doctors like you approach patient care?
3This trial is already completed — is there published data or a summary of what patients shared in those interviews that you could point me to, so I can better understand what others in my situation have reported feeling?
4Given that this study was about understanding the lived experience of epilepsy, do you think talking with a psychologist or counselor should be part of my own care plan, especially as I'm adjusting to this diagnosis?
5Are there currently any similar studies or support-focused programs you'd recommend that build on this kind of research, in case I'm interested in participating in something that addresses the emotional and personal side of managing epilepsy?'}
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.