How Parents (and Their Child if They Continue Their Life) Fare After a Decision of Palliative Care Has Been Taken in the Neonatal Period
试验速览
- 阶段
- 不适用
- 状态
- 终止
- 发起方
- 入组人数
- 1
- 试验地点
- 8
- 主要终点
- Semi Structured interview
研究概览
简要总结
Palliative care is now an accepted principle in most maternity and neonatology wards, however not much is known about its psychological and social consequences on families. Some children continue their life after a palliative care decision has been taken. In France, quality of life and the neuro-developmental evolution of newborns who continue their life after a palliative care decision has been taken, have never been studied.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Father and/or Mother of a child, who is alive or not, for whom a decision of palliative care has been made in the neonatal period
- •Under the care of one of the Level 3 Maternity Centers in the North and Pas-de-Calais departments (Arras, Lens, Lille, Valenciennes) since 2018
- •Written consent of the two legal guardians of the child allowing the collection of data concerning the child
- •Written consent of the parent(s) participating to this study by completing the parental questionnaires
排除标准
- •Medico-legal complaint underway
- •Parents who do not understand French
- •Parents or children who are under legal protection (guardianship, curatorship)
- •Parents or children who are not Social Security beneficiaries
结局指标
主要结局
Semi Structured interview
时间窗: 24 months after palliative care decision
Parents : Exploring the psychological and social impact of the palliative care decision 2 hours semi structured interviews will be done to describe the psychological and social impact a decision of palliative care concerning their newborn infant has on parents.
次要结局
- Intolerance to Uncertainty Scale (EEI)(24 months after palliative care decision)
- Semi Structured Interview(24 months after palliative care decision)
- Brief COPE(24 months after palliative care decision)
- Ages and Stages Questionnaire (ASQ) - Clinical Examination of Child(24 months after palliative care decision)
- Hospital Anxiety and Depression Scale (HADS)(24 months after palliative care decision)