Phenomenological Approach of Epilepsy in Patients With Epilepsy and Their Relatives for Risk Prevention
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 30
- 试验地点
- 1
- 主要终点
- interview with a psychologist
研究概览
简要总结
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.
详细描述
Rationale: Persons with epilepsy have a greater risk of incurring accidental injury and a higher mortality risk than the general population.
Study Objective : To understand life experience of the disease and risks associated with epilepsy in patients with epilepsy, relatives of patients with epilepsy and bereaved families.The results of this study will be integrated in educational therapeutic programs regarding risks related to epilepsy.
Study design : Qualitative study with a phenomenological approach and semiopragmatic analysis. Three different groups will be interviewed: bereaved families, patients with epilepsy and relatives of patients with epilepsy.
Recrutement procedures :
The identification of bereaved families will be based on the French sentinel network "Réseau Sentinelle Mortalité Epilepsie" (RSME). This network was initially established by the French League Against Epilepsy (LFCE) under the leadership of bereaved families in 2010 and supported by the French Foundation for Epilepsy Research (FFRE). The primary aim of the RSME is to detail the causes and circumstances of epilepsy-related deaths in France. Secondary objectives are to evaluate the expectations and needs of bereaved families and create a national database for future research programs. Epilepsy-related deaths are reported by physicians but also by bereaved families. The interview will be proposed at this moment. Moreover the RSME includes a national network of bereaved families. The interview will be also proposed to the participants of this network.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 15 Years 至 65 Years（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
排除标准
- •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
结局指标
主要结局
interview with a psychologist
时间窗: 1 day
The aim of this approach is to collect participants 'life-experiences in their own real and personal situation. Semistructured interviews with an in-depth questioning will be conducted by a psychologist The interview topic guide using open questions will be centered on participants' personal experience. The same topic guide will be used for the first group (epileptic patients) and the second group (relatives group). However, for the third group (bereaved families), the interview guide will be adapted, looking at life experience before death: focusing circumstances, particular events, behaviors or clinical signs which could give alarm. Interviews will be digitally recorded
次要结局
未报告次要终点